tag:blogger.com,1999:blog-61492156928608356182018-03-06T06:58:33.091-08:00Joeysmajoeybearsmomhttp://www.blogger.com/profile/17312273803247244366noreply@blogger.comBlogger34125tag:blogger.com,1999:blog-6149215692860835618.post-45629686100265670042016-02-21T09:11:00.001-08:002016-02-28T18:43:48.508-08:00Autism: Dear Lord - Give Me….<p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span class="s3"><span class="bumpedFont15" style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">.</span></span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span class="s3"><span class="bumpedFont15" style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">By Pamela Rundall Mari</span></span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">&nbsp;</span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span class="s3"><span class="bumpedFont15" style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">When my brother and I were small I can vividly remember my Mom saying “Dear Lord, Give me strength.” &nbsp;This was most probably uttered when we were acting up or she was overwhelmed being a single Mom. &nbsp;And we were typically developing children.</span></span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">&nbsp;</span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span class="s3"><span class="bumpedFont15" style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Now that I, as a single Mom, find myself raising a son with autism, I all too often repeat this phrase. &nbsp;And the other day as I did, I thought, what else do I ask for heavenly assistance with? &nbsp;</span></span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">&nbsp;</span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span class="s3"><span class="bumpedFont15" style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Dear Lord Give Me:</span></span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">&nbsp;</span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span class="s3"><span class="bumpedFont15" style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Strength - the strength to put in another day when I am physically, mentally and emotionally wiped out. &nbsp;Give me the strength to hold back the tears, the fears and the downright cries of desperation when I feel I am losing the battle to assist my son with his challenges.</span></span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">&nbsp;</span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span class="s3"><span class="bumpedFont15" style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Patience - to wait while my son learns to wait for things that he wants immediately and cannot gather the patience himself to do so. &nbsp;Wait for him to understand that not all things come as quickly as we want them. &nbsp; Patience to deal with those in the outside world that do not fully understand autism. &nbsp;Patience to answer their probing questions, their snide remarks and their ignorance regarding autism. &nbsp;Be patient with them, for in many cases, they simply do not know. &nbsp;They may seek, however, to understand if you have the patience to explain to them. &nbsp;</span></span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">&nbsp;</span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span class="s3"><span class="bumpedFont15" style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Insight - give me the insight needed to decipher what my son is telling me is his own way not being able to format the words properly as you or I do. &nbsp;Let me read into what he is trying to tell me in his language. &nbsp;Let me know from being his Mom and spending almost every waking moment with him, those things which escape the perception of others around him. &nbsp;I know what he means. &nbsp;I know what he wants. &nbsp;From experience.</span></span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">&nbsp;</span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span class="s3"><span class="bumpedFont15" style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Creativity - to keep his interest in learning new things. &nbsp;To take a bad situation and turn it into a laughing moment by redirecting him. &nbsp;To be quick thinking and use those things that are positive to him to change his mood from a negative one to a happy one in ten seconds flat. &nbsp;To show him he is capable of using his own creativity to sing or create stories or art.</span></span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">&nbsp;</span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span class="s3"><span class="bumpedFont15" style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Humility - to ask for help when I need it whether it be from therapists, teachers or other parents. &nbsp;When it comes to autism, none of us knows it all. &nbsp;Be humble enough to admit this and never be ashamed to ask for advice for this is how, as autism, parents, we learn and help others. &nbsp;</span></span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">&nbsp;</span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span class="s3"><span class="bumpedFont15" style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Bravery- to let go when need be. &nbsp;Allow him to participate in events or activities which from a Mom’s viewpoint might seem a bit scary or difficult for him. &nbsp;Encourage him to be brave but be brave yourself by not holding on too tightly. &nbsp;</span></span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span class="s3"><span class="bumpedFont15" style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Pride - Allow me to be proud of what I have accomplished for and with my son. &nbsp;There are many others who could not have done so. &nbsp;Although at times it is difficult to realize this, every day we scale another mountain. &nbsp;Instill pride in my child that he may know when he has done a good job. &nbsp;Teach him that being proud of one’s self is a good thing when you work hard to get to a goal.</span></span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">&nbsp;</span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span class="s3"><span class="bumpedFont15" style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Time - give me all the time and more that I am allotted to be on this earth to teach, love, cherish, encourage and fight for my son and all those like him. &nbsp;Time passes so quickly and there are days you turn around and wonder how you have gotten where you are. &nbsp;But there is so much more to do. &nbsp;Use it wisely but spend not too much worrying. &nbsp;</span></span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">&nbsp;</span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span class="s3"><span class="bumpedFont15" style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">So, Lord, give me and all autism parents these things. &nbsp;</span></span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">&nbsp;</span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span class="s3"><span class="bumpedFont15" style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">His answer: &nbsp;“You’ve always had them.”</span></span></p><br><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-pqrZ4Sn1syQ/VtOwMqIdhrI/AAAAAAAAHXE/TcyPP3x5ekg/s640/blogger-image-598454801.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-pqrZ4Sn1syQ/VtOwMqIdhrI/AAAAAAAAHXE/TcyPP3x5ekg/s640/blogger-image-598454801.jpg"></a></div>joeybearsmomhttp://www.blogger.com/profile/17312273803247244366noreply@blogger.com0tag:blogger.com,1999:blog-6149215692860835618.post-63128637045839912732016-02-21T09:06:00.001-08:002016-02-21T09:09:13.661-08:00Autism: Hashtag # TAGS<div><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-XJTX8i2wc_U/VsnvNzmukPI/AAAAAAAAHWw/CgJVuotWb34/s640/blogger-image-920316861.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-XJTX8i2wc_U/VsnvNzmukPI/AAAAAAAAHWw/CgJVuotWb34/s640/blogger-image-920316861.jpg"></a></div><br></div><div>&nbsp;</div><div>By Pamela B. Mari</div><div>&nbsp;</div><div>What is it about tags that drives our kids on the autism spectrum crazy? &nbsp;Well, most people would say it’s a sensory issue. &nbsp;Those scratchy, itchy tags feel like a million small biting ants against our children’s skin. &nbsp;And unless you are on a daily shopping mission to find clothing manufactured without tags you will have to deal with them.</div><div>&nbsp;</div><div>They come in many shapes, sizes, textures and variety of placements. &nbsp;You have your normal behind the neck shirt tag. &nbsp;Ok no biggee. &nbsp;Easily removed with scissors. &nbsp;Then you have the “sewn in” tag. &nbsp;These come in many varieties. &nbsp;You have the small horizontal, only sewn at the ends tags or the mega huge square sewn all around the outside tag. &nbsp;This requires the parent to use the super duper tag remover tool known as a “seam ripper”. &nbsp;The reason is these mega tags have over one million (or so it seems (seams)) (pun intended) stitches in them. &nbsp;But, if you’ve got the patience you can persevere and get these stinkers out. &nbsp;</div><div>&nbsp;</div><div>Then of course you have the sneaky, “I’m sewn to the bottom edge of the shirt” type of tag. &nbsp;Now this demon appears totally harmless and should really cause no sensory issues as it is usually affixed in an area that rests on the pant leg of the wearer, not the body itself. &nbsp;</div><div>&nbsp;</div><div>And parent be aware that these demon “tags” can make themselves known at the most inappropriate times. &nbsp;Meaning the tag does not become a problem until you are: a. in the car, &nbsp;b. walking into school, c. waiting for the bus in rain/snow or any given time or place that you do not, unless you are “super Mom”, happen to have scissors or seam ripper in hand.</div><div>&nbsp;</div><div>However, these type of tags now bring us to another realm.</div><div>&nbsp;</div><div>The “I JUST PLAIN HATE TAGS” TAGS. &nbsp;</div><div>&nbsp;</div><div>This is where the autism comes in as opposed to sensory issues. &nbsp;This presents itself as a hate for tags on EVERYTHING. &nbsp;</div><div>&nbsp;</div><div>Tags on pillows. &nbsp;Tags on stuffed animals. &nbsp;Tags on mattresses. &nbsp;Any tag has got to go. &nbsp;I can only assume that this is a rigidity of thought issue. &nbsp;I hate tags on my clothes therefore even though a tag on a teddy bear is not bothering me, it’s a tag and it has to go.</div><div>&nbsp;</div><div>As an autism parent you will never be able to give “hand me downs” away because you never know for sure what size clothing you are offering because there are no TAGS!!​</div><div>&nbsp;</div><div>So go forth and gather your tools for the war on these vile little critters.</div><div>&nbsp;</div><div>TAG YOU’RE IT!</div><div>&nbsp;</div><div><br></div>joeybearsmomhttp://www.blogger.com/profile/17312273803247244366noreply@blogger.com0tag:blogger.com,1999:blog-6149215692860835618.post-53669892928896639142016-01-09T08:55:00.001-08:002016-01-09T08:58:26.341-08:00The Language of Autism : Or "I'm Gonna Boof You"<div class="s2" style="margin-top: 0px; margin-bottom: 0px;"><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">&nbsp;</span></p></div><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span class="s3"><span class="bumpedFont15" style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">The Language of Autism or “I’m Gonna BOOF You!</span></span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">&nbsp;</span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span class="s3"><span class="bumpedFont15" style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">By Pamela Rundall Mari</span></span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">&nbsp;</span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span class="s3"><span class="bumpedFont15" style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">When my son was almost 3, he spoke his first word.. Blue. &nbsp;Brought about by Blue’s Clues, the TV Show. &nbsp;Prior to his autism diagnosis a year later, I thought he was just a late talker. &nbsp;He would point to things and grunt. &nbsp;He would stand in front of the TV, gesturing in concert with “Steve” of Blue’s Clues uttering jargon with the same intonation as Steve. &nbsp;</span></span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">&nbsp;</span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span class="s3"><span class="bumpedFont15" style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">The words came slowly. &nbsp;Blue, cake, ball. &nbsp;I used a technique called “recasting”. He would say “ball”. I would say “blue ball”. &nbsp;Repeat the word the child said but add on one more word. &nbsp;He would point to the cupboard and say in a demanding, frustrated tone “pretzel”,</span></span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span class="s3"><span class="bumpedFont15" style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">“pretzel”. &nbsp;I got so frustrated at his lack of sentences I blurted “I WANT A PRETZEL”,</span></span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span class="s3"><span class="bumpedFont15" style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Holding the desired item in front of him like the proverbial carrot. &nbsp;He was so angry he finally yelled “I want a pretzel”. &nbsp;YES..HERE YA GO SWEETY.</span></span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">&nbsp;</span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span class="s3"><span class="bumpedFont15" style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Fast forward thirteen years. &nbsp; He is now 17. &nbsp;He never stops talking. &nbsp;Some of the problem though is that as much as 75% of what he says is “scripting”. &nbsp;Repeating phrases, whole conversations from video taped movies. &nbsp;He is capable of carrying on a brief conversation, if the topic suits him. &nbsp;He soon drifts back to the scripting again. &nbsp;</span></span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">&nbsp;</span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span class="s3"><span class="bumpedFont15" style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">He makes up words, “neologisms” that represent other words to you or me. &nbsp;Example: &nbsp;If you bump into someone you have “BOOFED” them. &nbsp;“I’m gonna boof into you.” &nbsp;He refuses to say other words. &nbsp;TREE is leaves, branches, trunks and roots. Every time he needs to say the word tree. &nbsp;You can imagine how “Rocking Around the Christmas Tree” sounds. &nbsp; “Winnie the Pooh and the &nbsp;Honey Leaves, Branches, Trunks and Roots.“ &nbsp;A friend told me this description of a tree was also used in the Blue’s Clues show.</span></span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">&nbsp;</span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span class="s3"><span class="bumpedFont15" style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Bee is “makes honey lives in a hive”. &nbsp;Pretty becomes “beautiful”. Which is ok until you get to “that looks beautiful big”. &nbsp;Won’t say the number “four”. &nbsp;Holds up four fingers and says “this one”. &nbsp;Chicken is “hen that lays eggs and lives in a barn”. &nbsp;Something - (An aversive word for him - he gets horribly angry if you say “something”. &nbsp;He says &nbsp;“different than the other”.</span></span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">&nbsp;</span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span class="s3"><span class="bumpedFont15" style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">There are also word rules with regard to exact phrases.</span></span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span class="s3"><span class="bumpedFont15" style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Example: French fries, not just fries</span></span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span class="s3"><span class="bumpedFont15" style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Hamburgers, not burgers (unless it’s the line from the movie Pulp Fiction - “this is a tasty burger”. &nbsp;That’s allowed.</span></span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">&nbsp;</span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span class="s3"><span class="bumpedFont15" style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Slippers are slippers and never to be referred to as shoes. The pretzels we buy in the “blue bag” are called “blue pretzels” and don’t you dare forget to say “blue pretzels”. &nbsp; &nbsp; &nbsp; &nbsp; &nbsp; &nbsp; &nbsp; &nbsp; &nbsp;It’s not the “Spongebob” Movie, it’s the Spongebob Squarepants Movie. &nbsp;No shortcuts.</span></span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">&nbsp;</span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span class="s3"><span class="bumpedFont15" style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">You could say it’s creative. &nbsp;His own personal way of describing things. &nbsp;But for our family it is a major cause of distress. &nbsp;Let’s face it. &nbsp;How many times in a day do you say</span></span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span class="s3"><span class="bumpedFont15" style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">“I have to go upstairs to get SOMETHING”. &nbsp; And Lord only knows how many times we have messed up and said “here’s your FRIES”. &nbsp;No sooner does it leave my lips do I realize what’s coming next. &nbsp;A major upset from my son. &nbsp;There’s no blurting things out at our house. &nbsp;You truly stop and think what you are saying. &nbsp;</span></span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">&nbsp;</span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span class="s3"><span class="bumpedFont15" style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">But the bigger question is WHY? &nbsp;Why this self constructed set of rules with regard to words? &nbsp;“I don’t like that word” he will say. &nbsp;But that’s not the reason I believe. &nbsp;A friend and I have somewhat narrowed it down to the concept that “you” the “speaker” are using it out of the context he first heard it in. &nbsp;If he heard the words “down there” in a video where “Plankton” from Spongebob said “down there you moron”, you are not allowed to use that phrase unless you are repeating that script. &nbsp;</span></span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">&nbsp;</span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span class="s3"><span class="bumpedFont15" style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">So does it become a matter of rigidity of thought? &nbsp;Is it his way of keeping things the same. &nbsp;The “sameness” which seems to be so important to our kids. &nbsp;The security of knowing what’s coming next. &nbsp;The unexpected, change is so scary.</span></span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">&nbsp;</span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span class="s3"><span class="bumpedFont15" style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">I try so desperately to convince him that these “words” can be used in other ways. &nbsp;“Everyone is different” I tell him. &nbsp;We all speak differently. &nbsp;You cannot control what other folks say. &nbsp;If you don’t like what they say, then you can ask them “please don’t say that word” but you cannot let it upset you.</span></span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">&nbsp;</span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span class="s3"><span class="bumpedFont15" style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">At school the use the “let’s drown him in the word’ technique. &nbsp;If he says he doesn’t like a word they go out of their way to say it, or even play a song with the word in the title or chorus. &nbsp;The thinking is that over exposure to the word will result in him not being offended by it eventually. &nbsp;</span></span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">&nbsp;</span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span class="s3"><span class="bumpedFont15" style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">I honestly don’t have the guts for that method mainly because there is only one of me at home to deal with the meltdowns vs. six teachers/helpers/aides in the classroom. &nbsp;I’ve not been very successful to date to say the least. &nbsp;I tell him “words are just letters of the alphabet put together and letters cannot hurt you.” &nbsp;</span></span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">&nbsp;</span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span class="s3"><span class="bumpedFont15" style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">I long for the day when the old “sticks and stones can break my bones, but words can never hurt me” is a reality.</span></span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">&nbsp;</span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span class="s3"><span class="bumpedFont15" style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Or, am I barking up the wrong “leaves, branches, trunk and roots?</span></span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">&nbsp;</span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">&nbsp;</span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">&nbsp;</span></p><br><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-tGFJFdb_MZk/VpE8A0cBfaI/AAAAAAAAHWc/nJ5M1ETRSjM/s640/blogger-image--717468510.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-tGFJFdb_MZk/VpE8A0cBfaI/AAAAAAAAHWc/nJ5M1ETRSjM/s640/blogger-image--717468510.jpg"></a></div>joeybearsmomhttp://www.blogger.com/profile/17312273803247244366noreply@blogger.com0tag:blogger.com,1999:blog-6149215692860835618.post-24146632468456552802015-12-17T04:50:00.001-08:002015-12-17T04:56:56.335-08:00"When when"<p class="s1" style="margin-top: 0px; margin-bottom: 0px; word-wrap: break-word; direction: ltr;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><span class="s0"><span class="bumpedFont16">When, when !! Blast it all</span></span><span class="s0"><span class="bumpedFont16">…</span></span><span class="s0"><span class="bumpedFont16">.When!!!</span></span><span class="s0"><span class="bumpedFont16"><br></span></span></span></p><p class="s1" style="margin-top: 0px; margin-bottom: 0px; word-wrap: break-word; direction: ltr;"><span class="s0"><span class="bumpedFont16" style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></span></p><p class="s1" style="margin-top: 0px; margin-bottom: 0px; word-wrap: break-word; direction: ltr;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><span class="s0"><span class="bumpedFont16">By Pamela Mari&nbsp;</span></span><span class="s0"><span class="bumpedFont16"><br></span></span></span></p><p class="s1" style="margin-top: 0px; margin-bottom: 0px; word-wrap: break-word; direction: ltr;"><span class="s0"><span class="bumpedFont16" style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></span></p><p class="s1" style="margin-top: 0px; margin-bottom: 0px; word-wrap: break-word; direction: ltr;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><span class="s0"><span class="bumpedFont16">My son likes to watch&nbsp;</span></span><span class="s0"><span class="bumpedFont16">“</span></span><span class="s0"><span class="bumpedFont16">The Sword and the Stone</span></span><span class="s0"><span class="bumpedFont16">”</span></span><span class="s0"><span class="bumpedFont16">&nbsp;the Disney movie about Merlin the Magician. &nbsp;There is a scene where Merlin tells the sugar bowl&nbsp;</span></span><span class="s0"><span class="bumpedFont16">“</span></span><span class="s0"><span class="bumpedFont16">when, when, blast it all</span></span><span class="s0"><span class="bumpedFont16">…</span></span><span class="s0"><span class="bumpedFont16">.when!!</span></span><span class="s0"><span class="bumpedFont16">”</span></span><span class="s0"><span class="bumpedFont16">&nbsp;as the animated sugar bowl continues to spoon sugar overflowing his tea cup. &nbsp;The message -&nbsp;</span></span><span class="s0"><span class="bumpedFont16">“</span></span><span class="s0"><span class="bumpedFont16">enough is enough</span></span><span class="s0"><span class="bumpedFont16">”</span></span><span class="s0"><span class="bumpedFont16">.&nbsp;</span></span><span class="s0"><span class="bumpedFont16"><br></span></span></span></p><p class="s1" style="margin-top: 0px; margin-bottom: 0px; word-wrap: break-word; direction: ltr;"><span class="s0"><span class="bumpedFont16" style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></span></p><p class="s1" style="margin-top: 0px; margin-bottom: 0px; word-wrap: break-word; direction: ltr;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><span class="s0"><span class="bumpedFont16">This too, is true for many of our kids with autism. &nbsp;You have to plan accordingly. &nbsp;You have to know when</span></span><span class="s0"><span class="bumpedFont16">“</span></span><span class="s0"><span class="bumpedFont16">enough is enough</span></span><span class="s0"><span class="bumpedFont16">”</span></span><span class="s0"><span class="bumpedFont16">&nbsp;&nbsp;or you may be pushing your and their limits.&nbsp;</span></span><span class="s0"><span class="bumpedFont16"><br></span></span></span></p><p class="s1" style="margin-top: 0px; margin-bottom: 0px; word-wrap: break-word; direction: ltr;"><span class="s0"><span class="bumpedFont16" style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></span></p><p class="s1" style="margin-top: 0px; margin-bottom: 0px; word-wrap: break-word; direction: ltr;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><span class="s0"><span class="bumpedFont16">This week we were scheduled for a&nbsp;</span></span><span class="s0"><span class="bumpedFont16">“</span></span><span class="s0"><span class="bumpedFont16">psych eval</span></span><span class="s0"><span class="bumpedFont16">”</span></span><span class="s0"><span class="bumpedFont16">. &nbsp;A tedious task that must be done every six months in our area to determine if a child still&nbsp;</span></span><span class="s0"><span class="bumpedFont16">“</span></span><span class="s0"><span class="bumpedFont16">qualifies</span></span><span class="s0"><span class="bumpedFont16">”</span></span><span class="s0"><span class="bumpedFont16">&nbsp;for therapeutic staff support services, mobile therapy and behavioral specialist support. &nbsp;Basically, red tape for the insuranc</span></span><span class="s0"><span class="bumpedFont16">e company to make sure they are paying for</span></span><span class="s0"><span class="bumpedFont16">“</span></span><span class="s0"><span class="bumpedFont16">progress</span></span><span class="s0"><span class="bumpedFont16">”</span></span><span class="s0"><span class="bumpedFont16">&nbsp;on the child</span></span><span class="s0"><span class="bumpedFont16">’</span></span><span class="s0"><span class="bumpedFont16">s part. &nbsp;My son has begun to hate these visits to the provider</span></span><span class="s0"><span class="bumpedFont16">’</span></span><span class="s0"><span class="bumpedFont16">s office because on previous occassions, he overheard another child on the spectrum making loud vocalizations. &nbsp;He remembers tha</span></span><span class="s0"><span class="bumpedFont16">t. &nbsp;Every time we go now I</span></span><span class="s0"><span class="bumpedFont16">’</span></span><span class="s0"><span class="bumpedFont16">m biting my lip that he makes it though without meltdown.</span></span><span class="s0"><span class="bumpedFont16"><br></span></span></span></p><p class="s1" style="margin-top: 0px; margin-bottom: 0px; word-wrap: break-word; direction: ltr;"><span class="s0"><span class="bumpedFont16" style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></span></p><p class="s1" style="margin-top: 0px; margin-bottom: 0px; word-wrap: break-word; direction: ltr;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><span class="s0"><span class="bumpedFont16">He was doing surprisingly well. &nbsp;Answering all the doctor</span></span><span class="s0"><span class="bumpedFont16">’</span></span><span class="s0"><span class="bumpedFont16">s questions about school and camp and Halloween. &nbsp;She gave a nod showing her approval of his participation in the conversation.&nbsp;</span></span><span class="s0"><span class="bumpedFont16">We were about 20 minutes into the interview at that point. &nbsp;</span></span><span class="s0"><span class="bumpedFont16"><br></span></span></span></p><p class="s1" style="margin-top: 0px; margin-bottom: 0px; word-wrap: break-word; direction: ltr;"><span class="s0"><span class="bumpedFont16" style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></span></p><p class="s1" style="margin-top: 0px; margin-bottom: 0px; word-wrap: break-word; direction: ltr;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><span class="s0"><span class="bumpedFont16">I could tell he was nearing the&nbsp;</span></span><span class="s0"><span class="bumpedFont16">“</span></span><span class="s0"><span class="bumpedFont16">when, when</span></span><span class="s0"><span class="bumpedFont16">”</span></span><span class="s0"><span class="bumpedFont16">&nbsp;limit when the&nbsp;</span></span><span class="s0"><span class="bumpedFont16">“</span></span><span class="s0"><span class="bumpedFont16">sugar overflowed the tea cup</span></span><span class="s0"><span class="bumpedFont16">”</span></span><span class="s0"><span class="bumpedFont16">. &nbsp;He became upset when the doctor said one of his&nbsp;</span></span><span class="s0"><span class="bumpedFont16">“</span></span><span class="s0"><span class="bumpedFont16">least preferred words</span></span><span class="s0"><span class="bumpedFont16">”</span></span><span class="s0"><span class="bumpedFont16">&nbsp;(he has a major aversion to some common words and gets very upset). &nbsp; The glorious presentation turned into a major meltdown. &nbsp;</span></span><span class="s0"><span class="bumpedFont16">Ok, bad enough. &nbsp;Sometimes it cannot be avoided but then, to make matters worse, both the doctor and my son</span></span><span class="s0"><span class="bumpedFont16">’</span></span><span class="s0"><span class="bumpedFont16">s Dad started calling his name to get his attention, thinking they could stop the meltdown. &nbsp;</span></span><span class="s0"><span class="bumpedFont16"><br></span></span></span></p><p class="s1" style="margin-top: 0px; margin-bottom: 0px; word-wrap: break-word; direction: ltr;"><span class="s0"><span class="bumpedFont16" style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></span></p><p class="s1" style="margin-top: 0px; margin-bottom: 0px; word-wrap: break-word; direction: ltr;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><span class="s0"><span class="bumpedFont16">I am not on the spectrum but I had a major auditory issue with hearing his name being called from two directions in the room.&nbsp;</span></span><span class="s0"><span class="bumpedFont16">“</span></span><span class="s0"><span class="bumpedFont16">JOEY</span></span><span class="s0"><span class="bumpedFont16">”</span></span><span class="s0"><span class="bumpedFont16">…</span></span><span class="s0"><span class="bumpedFont16">left</span></span><span class="s0"><span class="bumpedFont16">…</span></span><span class="s0"><span class="bumpedFont16">”</span></span><span class="s0"><span class="bumpedFont16">JOEY</span></span><span class="s0"><span class="bumpedFont16">…</span></span><span class="s0"><span class="bumpedFont16">right</span></span><span class="s0"><span class="bumpedFont16">”</span></span><span class="s0"><span class="bumpedFont16">&nbsp;</span></span><span class="s0"><span class="bumpedFont16">“</span></span><span class="s0"><span class="bumpedFont16">JOEY</span></span><span class="s0"><span class="bumpedFont16">…</span></span><span class="s0"><span class="bumpedFont16">left</span></span><span class="s0"><span class="bumpedFont16">”</span></span><span class="s0"><span class="bumpedFont16"><br></span></span></span></p><p class="s1" style="margin-top: 0px; margin-bottom: 0px; word-wrap: break-word; direction: ltr;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><span class="s0"><span class="bumpedFont16">“</span></span><span class="s0"><span class="bumpedFont16">JOEY</span></span><span class="s0"><span class="bumpedFont16">…</span></span><span class="s0"><span class="bumpedFont16">right</span></span><span class="s0"><span class="bumpedFont16">”</span></span><span class="s0"><span class="bumpedFont16">. &nbsp;It was a bombardment of sound that even I could not stand. &nbsp;I don</span></span><span class="s0"><span class="bumpedFont16">’</span></span><span class="s0"><span class="bumpedFont16">t know what kept me from saying&nbsp;</span></span><span class="s0"><span class="bumpedFont16">“</span></span><span class="s0"><span class="bumpedFont16">Blast it all..WHEN!!!!! &nbsp; Do either of you really think that by yelling his name together it will help calm him? &nbsp;</span></span><span class="s0"><span class="bumpedFont16"><br></span></span></span></p><p class="s1" style="margin-top: 0px; margin-bottom: 0px; word-wrap: break-word; direction: ltr;"><span class="s0"><span class="bumpedFont16" style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></span></p><p class="s1" style="margin-top: 0px; margin-bottom: 0px; word-wrap: break-word; direction: ltr;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><span class="s0"><span class="bumpedFont16">We managed to&nbsp;</span></span><span class="s0"><span class="bumpedFont16">“</span></span><span class="s0"><span class="bumpedFont16">escape</span></span><span class="s0"><span class="bumpedFont16">”</span></span><span class="s0"><span class="bumpedFont16">&nbsp;the office in what seemed to be an eternity. &nbsp; I would think that a professional in the field would understand the idea that so</span></span><span class="s0"><span class="bumpedFont16">me of our children do not do well in question and answer periods. &nbsp;And, if they manage to make it through, don</span></span><span class="s0"><span class="bumpedFont16">’</span></span><span class="s0"><span class="bumpedFont16">t</span></span><span class="s0"><span class="bumpedFont16">’</span></span><span class="s0"><span class="bumpedFont16">&nbsp;push your luck. &nbsp;</span></span><span class="s0"><span class="bumpedFont16"><br></span></span></span></p><p class="s1" style="margin-top: 0px; margin-bottom: 0px; word-wrap: break-word; direction: ltr;"><span class="s0"><span class="bumpedFont16" style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></span></p><p class="s1" style="margin-top: 0px; margin-bottom: 0px; word-wrap: break-word; direction: ltr;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><span class="s0"><span class="bumpedFont16">In speaking with another autism mom today and explaining the situation to her she offered her thoughts. &nbsp;She remarked that she h</span></span><span class="s0"><span class="bumpedFont16">as no problem at this point in her life in explaining when beginning an interview with her son, that if she sees her child becom</span></span><span class="s0"><span class="bumpedFont16">ing nervous or agitated she will, for the benefit of all concerned, immediately state they are leaving to prevent any such incid</span></span><span class="s0"><span class="bumpedFont16">ent and unnecessary anxiety for her son. &nbsp;I took that piece of advice under advisement.&nbsp;</span></span><span class="s0"><span class="bumpedFont16"><br></span></span></span></p><p class="s1" style="margin-top: 0px; margin-bottom: 0px; word-wrap: break-word; direction: ltr;"><span class="s0"><span class="bumpedFont16" style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></span></p><p class="s1" style="margin-top: 0px; margin-bottom: 0px; word-wrap: break-word; direction: ltr;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><span class="s0"><span class="bumpedFont16">I had not however, practiced what I preached because I had also scheduled an in home visit on the very same day, two hours after</span></span><span class="s0"><span class="bumpedFont16">&nbsp;the psych eval, by a state visual consultant for my son</span></span><span class="s0"><span class="bumpedFont16">’</span></span><span class="s0"><span class="bumpedFont16">s vocational goals. &nbsp;</span></span><span class="s0"><span class="bumpedFont16"><br></span></span></span></p><p class="s1" style="margin-top: 0px; margin-bottom: 0px; word-wrap: break-word; direction: ltr;"><span class="s0"><span class="bumpedFont16" style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></span></p><p class="s1" style="margin-top: 0px; margin-bottom: 0px; word-wrap: break-word; direction: ltr;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><span class="s0"><span class="bumpedFont16">“</span></span><span class="s0"><span class="bumpedFont16">Oh no</span></span><span class="s0"><span class="bumpedFont16">”</span></span><span class="s0"><span class="bumpedFont16">, I thought,&nbsp;</span></span><span class="s0"><span class="bumpedFont16">“</span></span><span class="s0"><span class="bumpedFont16">he will never make it through another interview today</span></span><span class="s0"><span class="bumpedFont16">”</span></span><span class="s0"><span class="bumpedFont16">,&nbsp;</span></span><span class="s0"><span class="bumpedFont16">“</span></span><span class="s0"><span class="bumpedFont16">I have to call her and cancel</span></span><span class="s0"><span class="bumpedFont16">”</span></span><span class="s0"><span class="bumpedFont16">. &nbsp;I was wielding the sugar spoon and had not taken my own&nbsp;</span></span><span class="s0"><span class="bumpedFont16">“</span></span><span class="s0"><span class="bumpedFont16">when, when</span></span><span class="s0"><span class="bumpedFont16">”</span></span><span class="s0"><span class="bumpedFont16">&nbsp;recommendations. &nbsp; About half an hour passed and things calmed down. &nbsp;</span></span><span class="s0"><span class="bumpedFont16"><br></span></span></span></p><p class="s1" style="margin-top: 0px; margin-bottom: 0px; word-wrap: break-word; direction: ltr;"><span class="s0"><span class="bumpedFont16" style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></span></p><p class="s1" style="margin-top: 0px; margin-bottom: 0px; word-wrap: break-word; direction: ltr;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><span class="s0"><span class="bumpedFont16">My son made it through the second interview with flying colors. &nbsp;I was amazed at his conversation with the vocational counselor.</span></span><span class="s0"><span class="bumpedFont16">&nbsp;&nbsp;She too smiled at his answers to her questions. &nbsp; As the conversation ended he directed her in the blunt fashion some of our c</span></span><span class="s0"><span class="bumpedFont16">hildren exhibit&nbsp;</span></span><span class="s0"><span class="bumpedFont16">“</span></span><span class="s0"><span class="bumpedFont16">you have to leave now</span></span><span class="s0"><span class="bumpedFont16">”</span></span><span class="s0"><span class="bumpedFont16">. &nbsp;And she did but we had accomplished two very important goals and survived.&nbsp;</span></span><span class="s0"><span class="bumpedFont16"><br></span></span></span></p><p class="s1" style="margin-top: 0px; margin-bottom: 0px; word-wrap: break-word; direction: ltr;"><span class="s0"><span class="bumpedFont16" style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></span></p><p class="s1" style="margin-top: 0px; margin-bottom: 0px; word-wrap: break-word; direction: ltr;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><span class="s0"><span class="bumpedFont16">I will not, however, ever, keep spooning that sugar on. &nbsp;I now know&nbsp;</span></span><span class="s0"><span class="bumpedFont16">“</span></span><span class="s0"><span class="bumpedFont16">when</span></span><span class="s0"><span class="bumpedFont16">”</span></span><span class="s0"><span class="bumpedFont16">.&nbsp;</span></span><span class="s0"><span class="bumpedFont16"><br></span></span></span></p><div><span class="s0" style="font-size: 12px; font-family: 'Times New Roman';"><span class="bumpedFont16" style="font-size: 1.6em;"><br></span></span></div><br><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-DSin-1DBx_s/VnKvrAUpIlI/AAAAAAAAHWI/CNk2uPK6UhQ/s640/blogger-image--81057976.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-DSin-1DBx_s/VnKvrAUpIlI/AAAAAAAAHWI/CNk2uPK6UhQ/s640/blogger-image--81057976.jpg"></a></div>joeybearsmomhttp://www.blogger.com/profile/17312273803247244366noreply@blogger.com0tag:blogger.com,1999:blog-6149215692860835618.post-82471682862981176402015-11-02T14:35:00.001-08:002016-03-16T14:56:19.720-07:00A Deal With The Deer My Dear<h2>A Deal With The Deer My Dear&nbsp;</h2>by Pamela Mari<br><br>As I turned the corner to enter the cookie aisle at the supermarket I spied an elderly gentleman. &nbsp;He might have been late 60’s early 70’s. &nbsp;He used one of those “oh, I’m not getting much today” mini shopping carts. &nbsp;He was examining a generic box of wheat thins. &nbsp;There might have been one other item in the cart. &nbsp;There was no missing however, the large bouquet of yellow daisies that stuck out of the front of the cart. &nbsp;I could not resist commenting.<br><br>“Who’s the lucky lady?” I inquired. &nbsp;His head came up to meet my gaze. &nbsp;“My wife”, he replied “she’s at the cemetery”. &nbsp;“I’m so sorry”, I said. <br><br>“ She was very sick, she’s in a better place” &nbsp;“The funny thing is, “ he noted, “ she always hated fresh flowers”. &nbsp;“ The damn deer eat them as soon as I leave them at the grave”. &nbsp;“ I think she’s in cahoots with them”, he chuckled.<br><br>“I go there a lot” he said “it makes me feel better”. &nbsp;“She was the best thing in my life”.<br><br>As we parted I felt so bad for him but I was uplifted by his sincerity and true love for this woman he has lost. &nbsp;How lucky she was to have had him. &nbsp; I’m sure she doesn’t mind the flowers now.<br><div class="separator" style="clear: both; text-align: center;"><a href="http://1.bp.blogspot.com/-nlulGYhxY8g/VjflNggy6xI/AAAAAAAAHV0/YzO6OLn4EJc/s1600/deereatingflowers.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://1.bp.blogspot.com/-nlulGYhxY8g/VjflNggy6xI/AAAAAAAAHV0/YzO6OLn4EJc/s1600/deereatingflowers.jpg"></a></div><div><br></div>joeybearsmomhttp://www.blogger.com/profile/17312273803247244366noreply@blogger.com1tag:blogger.com,1999:blog-6149215692860835618.post-88307734591415499382015-06-13T08:08:00.001-07:002015-07-12T07:52:15.386-07:00Autism: If Things Were Different<div>Autism: &nbsp;If Things Were Different&nbsp;</div><div>by Pam Mari</div><div><br></div><div>Today is my nephew's 16th birthday party. It's a surprise party. &nbsp;His Mom, my sister in law, has been working her tail off to make it extra special. &nbsp;She's a graphic artist. She designed the invitations and sent them via instagram. &nbsp;The party color scheme coordinates with the colors on the invitation. &nbsp;She is detail crazy and will drive herself to the brink of exhaustion to make sure every detail; food, games, music, pool toys and poolside seating are all creatively presented and arranged.</div><div><br></div><div>It's a rite of passage for her son and she wants it to be memorable for both him and his friends. &nbsp;</div><div><br></div><div>My son, his cousin, is 17. &nbsp;And has autism.&nbsp;</div><div><br></div><div>Were we invited? &nbsp;NO. &nbsp;Am I upset about it?</div><div>ABSOLUTELY NOT.&nbsp;</div><div><br></div><div>But, I can't help thinking if things were different how the day would go.</div><div><br></div><div>There are over 30 teenagers on the guest list. &nbsp;It will be loud. &nbsp;The music will be blasting. &nbsp;My son could not tolerate this sensory overload.&nbsp;</div><div><br></div><div>There will be girls singing along with the music. My son hates other people singing. &nbsp;</div><div><br></div><div>There will be kids jumping, diving and running around the pool. &nbsp;Swimming races. &nbsp;Pool basketball.&nbsp;</div><div>Pool noodle fights. Loud voices yelling "look out"!</div><div>Girls shrieking with excitement. &nbsp;Splashes in your face. &nbsp;Too much excitement and noise for my son.&nbsp;</div><div><br></div><div>30 kids and not one of them would have an idea in the least of how to interact with my son. &nbsp;That is not to say that they don't want to. &nbsp;They simply don't know how. &nbsp;You can't give a crash course in autism during a birthday party. &nbsp;</div><div><br></div><div>My son would probably end up smushed in a corner of the pool by himself trying to avoid all the excitement. &nbsp;I'd probably have to rush him into the bathroom after he got out of the pool as he doesnt' understand you just don't take off your trunks in front of other people, especially girls. &nbsp;Somewhere along the line I would, with 90% accuracy, predict a meltdown. &nbsp;</div><div><br></div><div>And the fact of the matter is, I just wouldn't want to go there. &nbsp;I wouldn't want my nephew to have to deal with this at his special party. &nbsp;I wouldn't want my son to have to endure this just to say he went. &nbsp;</div><div><br></div><div>But I can't help thinking if things were different.&nbsp;</div><div><br></div><div>"Hey", the voice on the phone says, " don't forget to tell Joey he has to come to Thomas' birthday party. &nbsp;He would want his cousin here."</div><div><br></div><div>We would pack up and make sure we were there on time and bring a present that my son would pick out because teens know what other teens like.&nbsp;</div><div><br></div><div>My son is a good looking kid much like his cousins. &nbsp;I'm sure the girls would want to hang with him. &nbsp;He's a good singer and would probably be singing along with the group to the blasting music. &nbsp;</div><div><br></div><div>"Hey Mom, I tried some of that spinach dip Aunt D made. &nbsp;I've never had it before. &nbsp;I like it. Can you make some for us at home?"</div><div><br></div><div>"I appreciate the chance to sit and relax" my sister in law says. &nbsp;"Where's Joey?" she asks. "Oh, I dunno he probably went for a walk with the other kids", "they will be fine, probably walked over to the shopping center to get some pizza". &nbsp;</div><div><br></div><div>"Mom, can I stay here and you go home?" &nbsp;"Aunt D is gonna make a bonfire and I want to stay until later". "Ok, text me when you are ready to come home", I reply.&nbsp;</div><div><br></div><div>On the way home my son tells me about one of the girls he met at the party. &nbsp;He says he might like to meet her at the mall and see a movie next week.&nbsp;</div><div><br></div><div>It was a good day for him and his cousin.&nbsp;</div><div><br></div><div>But instead, we will stay home. &nbsp;We will make peanut butter and banana sandwiches. &nbsp;None of which he will eat. &nbsp;We will watch the same video ten times during that day. &nbsp;I will try to avoid making loud noises or saying the wrong word or god forbid, singing. &nbsp;And my nephew, hopefully will have a great time and his stressed out Mom will see the fruits of all her labors give joy to her son.&nbsp;</div><div><br></div><div>But I can't help thinking - if things were different.&nbsp;</div><div><br></div><div><br></div><br><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-4Jkc1GL1ijI/VXxIfJzDG2I/AAAAAAAAHBg/l3GpB61mj-k/s640/blogger-image--1430047914.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-4Jkc1GL1ijI/VXxIfJzDG2I/AAAAAAAAHBg/l3GpB61mj-k/s640/blogger-image--1430047914.jpg"></a></div>joeybearsmomhttp://www.blogger.com/profile/17312273803247244366noreply@blogger.com0tag:blogger.com,1999:blog-6149215692860835618.post-61271827333604032632015-06-12T11:39:00.001-07:002015-06-12T11:46:58.385-07:00Random Acts of Coffee<div>Autism: Random Acts of Coffee</div><div>By Pam Mari</div><div><br></div><div>My son has autism and a self restricted diet. I'm at McDonalds every day. We have one local McD's that he refers to by location "top of the hill McD's ". &nbsp;The other day I went on my usual french fry run. One of the regular staff was on break and standing outside. We started talking. She asked about my son. &nbsp;</div><div><br></div><div>I explained a little about kids on the spectrum and how many times due to sensory issues they only eat a few food items. I told her how my son used to like to feed the seagulls that invade the parking lot each summer.&nbsp;</div><div><br></div><div>"I cry every stinking day" I told her,"because now he cannot see the seagulls. He can't see anything." I explained to her what we have been through in the past three years in regard to my son's vision problems. &nbsp;She listened and then announced that she had to go back to work. &nbsp;"I hope things get better for you" she commented.&nbsp;</div><div><br></div><div>I decided to take the drive thru method since it was raining and as I approached the pick up window the girl said to me "do you want a cup carrier?". &nbsp;"No," I replied "I only have one drink, the large Hi C".&nbsp;</div><div>She held in her hand a coffee cup. &nbsp;"Isn't this yours?" she asked.</div><div><br></div><div>"No not today", I replied. &nbsp;"Oh well our manager said you usually get a vanilla latte so she made it by mistake so here, it's on us", she announced.</div><div><br></div><div>"Oh thank you" I said. &nbsp;" Well she's right here, if you want to thank her" she noted. &nbsp;She moved aside and it was the young lady that I had been talking to outside the McD's earlier. &nbsp;</div><div><br></div><div>It made my day. &nbsp;A Random Act of Coffee-A Random Act of Kindness.&nbsp;</div><div><br></div><div>I told everyone I met that day how thoughtful it was of her to take notice of my sadness and make a small effort to brighten my day. &nbsp;</div><div><br></div><div>You might say to yourself "I wouldn't know where to start" to do this for someone. &nbsp;Any small gesture will do. &nbsp;Take a shopping cart back to the store for someone. &nbsp;Bring their trash cans back from the curb after pick up day. &nbsp;Put a cupcake on a co-worker's desk. &nbsp;Making cookies? &nbsp;Take some to school for the office ladies. &nbsp;</div><div><br></div><div>Know a Mom of a special needs child? &nbsp;She may appear to have it all together as he plays chauffer, doctor,therapist and teacher to her child but trust me, there's nothing nicer than a little surprise from someone to keep you going. &nbsp;</div><div><br></div><div>Random Acts of Kindness. &nbsp;Random Acts of Coffee</div><div><br></div><div>Spread that stuff around-a latte!</div><div><br></div><div><br></div><div><br></div><div><br></div><br><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-Hgrehb2Oosc/VXspIMpB-nI/AAAAAAAAHBM/QslU3LYYvH8/s640/blogger-image-1093646981.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-Hgrehb2Oosc/VXspIMpB-nI/AAAAAAAAHBM/QslU3LYYvH8/s640/blogger-image-1093646981.jpg"></a></div>joeybearsmomhttp://www.blogger.com/profile/17312273803247244366noreply@blogger.com0tag:blogger.com,1999:blog-6149215692860835618.post-64081622875051706422015-02-11T19:19:00.001-08:002015-03-14T05:46:35.515-07:00Autism: Not ToniteI wonder just for once if I could blog about something other than autism. &nbsp;I do, sometimes, get tired of talking about it. &nbsp;<div><br></div><div>It's been a rotten winter here. &nbsp;Not a lot of snow, but every time you turn around it is snowing. &nbsp;Just enough to be a bother. &nbsp;Just enough to cause a school delay or school closing. &nbsp;Lack of school and lack of structure is a nightmare for our kids with autism. &nbsp; OOPS.&nbsp;</div><div><br></div><div>I suppose I should be thankful that it is February and my son has just caught his first very bad chest cold of the season. &nbsp;We've been off school since last Thursday and finally decided a visit to the Dr. would be in order, mainly to check the lungs as his cough sounds worse than an old man in a bus station.&nbsp;</div><div><br></div><div>&nbsp;I always prepare a written autism prep page for the staff and for the new Dr we were seeing this visit. &nbsp;Because of my son's autism. &nbsp;OOOPS. &nbsp; I write a small sign "please don't say the word feel" it is a meltdown trigger. &nbsp;The nurses are very kind and understanding. &nbsp;</div><div><br></div><div>The new Dr. we saw this visit was not a good match. &nbsp;Enters the exam room saying "Hi, Hi, HI, HI'.&nbsp;</div><div><br></div><div>Well, you don't repeat words numerous times in my son's book of rules so that did not start us off well. &nbsp;When he went to look in my son's ears, i was seated next to him and even to me, HE WAS LOUD.</div><div><br></div><div>"YOU HAVE TO LET ME LOOK IN YOUR EARS" &nbsp;HE YELLS!!!!! &nbsp;&nbsp;</div><div><br></div><div>Im old &nbsp;but not senile yet. &nbsp;Didn't I tell you when you entered the room that he is very sound sensitive?? &nbsp;Maybe that's too complex an idea for you, a doctor, to grasp. &nbsp;My son started to cover his ears and rightfully so. &nbsp;YOU HAVE TO HOLD HIS HANDS , he demands. &nbsp; Okey Dokey Doc. &nbsp;Just super bedside manner. &nbsp;</div><div><br></div><div>I'm only allowed to spend ten minutes per patient the doctor tells us. &nbsp;So, I'm basing this diagnosis on what I see right now. &nbsp;If it gets worse come back. &nbsp;OH THANKS I FEEL SO MUCH BETTER NOW.&nbsp;</div><div><br></div><div>Autism or not, I don't think you are a great pediatrician. &nbsp;Autism or not OOPS.&nbsp;</div><div><br></div><div><br></div><br><div class="separator" style="clear: both;"><a href="https://lh5.googleusercontent.com/-nceGtbp_j0k/VQQtqtGy7QI/AAAAAAAAHAI/JjzmJL6JCNQ/s640/blogger-image--505551124.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh5.googleusercontent.com/-nceGtbp_j0k/VQQtqtGy7QI/AAAAAAAAHAI/JjzmJL6JCNQ/s640/blogger-image--505551124.jpg"></a></div>joeybearsmomhttp://www.blogger.com/profile/17312273803247244366noreply@blogger.com0tag:blogger.com,1999:blog-6149215692860835618.post-12542891536601983332015-01-17T17:09:00.001-08:002015-01-17T17:20:27.947-08:00What WE Celebrate- Autie Moms Be Like Yippee<div>"What We Celebrate" "Autie Moms Be Like - Yippee!!"</div><div><br></div><div>by Pamela Mari</div><div><br></div><div>What autism moms celebrate is not like what a regular moms whoops it up about. &nbsp;Our thrills are smaller, later, and less frequent than other moms. &nbsp;But we hang on to them and advertise them to our friends and other autie moms with a chest full of pride. &nbsp;The first successful bathroom visit, a new word, a full sentence, a new food, a pleasant public event, any of these is cause for a major celebration in our world. &nbsp;</div><div><br></div><div>Our house is similar. &nbsp;My son is what is termed "verbal" meaning he can talk. &nbsp;He never shuts up. &nbsp;The catch is however, how much of this is meaningful "conversation"? &nbsp;The ability to converse with another person is another highly sought after goal in our spectrum world. &nbsp;</div><div><br></div><div>But sometimes they catch you off guard. &nbsp;</div><div><br></div><div>This week as I opened the car door for my son's aide to guide him into school he asked my son "How are you today Joey?". &nbsp;With one foot in and one foot out of the car, stepping onto the curb my son replied&nbsp;</div><div>"I'm sick of this weather". &nbsp;</div><div><br></div><div>My mouth was hanging open for a few seconds. &nbsp;Damn straight kiddo! &nbsp;This weather sucks and that's exactly what I would have said on a morning like this. &nbsp;It was appropriate to the question. &nbsp;It was timely in that it shot out of his mouth without a moment's hesitation. &nbsp;It was delivered in an appropriate tone. &nbsp;And it was uttered and just left as that. &nbsp;He did not perseverate on the topic as he tends to do many times. &nbsp;Just said it and forget it. &nbsp;</div><div><br></div><div>So when your child comes home from school today and you ask him&nbsp;</div><div>"how was school today Henry?" and he answers "class was boring" and walks upstairs remember for a child with autism, it's the greatest thing since sliced bread.&nbsp;</div><br><div class="separator" style="clear: both;"><a href="https://lh5.googleusercontent.com/-l2DkJGNiTi0/VLsKWpFL66I/AAAAAAAAG_Y/vMdEVHwOYHg/s640/blogger-image--1759287789.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh5.googleusercontent.com/-l2DkJGNiTi0/VLsKWpFL66I/AAAAAAAAG_Y/vMdEVHwOYHg/s640/blogger-image--1759287789.jpg"></a></div>joeybearsmomhttp://www.blogger.com/profile/17312273803247244366noreply@blogger.com0tag:blogger.com,1999:blog-6149215692860835618.post-54759073508629531652014-09-28T06:40:00.001-07:002014-09-28T06:54:06.759-07:00Autism: I Just Called to Say "I'm Tired"<div><div class="separator" style="clear: both;"><a href="https://lh6.googleusercontent.com/-DM0IskOZ_CI/VCgS_XJIxjI/AAAAAAAAG_E/-KCGMtBHqZE/s640/blogger-image-541502179.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh6.googleusercontent.com/-DM0IskOZ_CI/VCgS_XJIxjI/AAAAAAAAG_E/-KCGMtBHqZE/s640/blogger-image-541502179.jpg"></a></div><br></div><div><br></div><div><br></div><div>Autism: &nbsp;I Just Called to Say "I'm Tired"</div><div><br></div><div>by Pam Mari&nbsp;</div><div><br></div><div>Dear Autism:&nbsp;</div><div><br></div><div>I got your voicemail yesterday. &nbsp;I suppose I was busy when you called and to be honest I usually don't respond to voice mails because they are usually from bill collectors. &nbsp;</div><div><br></div><div>But your question deserves an answer. &nbsp;You inquired " I just called to ask how you and your son are doing, being that I'm in your life I figure I'm entitled to know".&nbsp;</div><div><br></div><div>Yes I suppose you are right. &nbsp;Let me enlighten you. &nbsp;</div><div><br></div><div>I AM TIRED.&nbsp;</div><div>I AM TIRED.&nbsp;</div><div>I AM TIRED.</div><div><br></div><div>And since you seem to operate on a 24/7/365 schedule you must never tire. &nbsp;It appears that you never tire of causing pain and disruption. &nbsp;</div><div>You never tire of bringing tears to my son's and my eyes. &nbsp;You never tire of stressing out marriages. &nbsp;You never tire of stealing otherwise enjoyable moments from my son's life. &nbsp;You never tire of tying my stomach in a knot first thing in the morning or the last thing at night.&nbsp;</div><div><br></div><div><br></div><div>Perhaps your perseverance, stubbornness and never say die attitude is the only thing I could applaud about you. &nbsp;But alas, for me, I'm freaking tired.&nbsp;</div><div><br></div><div>Allow me to elaborate.&nbsp;</div><div><br></div><div><br></div><div>As I stated before, I'm tired.&nbsp;</div><div>I'm tired of the crying.&nbsp;</div><div>I'm tired of the meltdowns.&nbsp;</div><div>I'm tired of the sensory issues that make simple tasks like bathing, haircuts and clothing a major battle.&nbsp;</div><div>I'm tired of the rigidity of thought you cause that makes it so I cannot utter certain words or phrases to my son because for him, they are only to be used in the context he heard them in - a video.&nbsp;</div><div>I'm tired of hearing ten seconds of a video over and over and over and over again.&nbsp;</div><div>I'm tired of trying so hard to teach simple social skills like why it is wrong to scream at ten at night.&nbsp;</div><div>I'm tired of working so hard to get my son to take one little bite of a different food. &nbsp;His diet stinks you see and I worry about his health.&nbsp;</div><div>I'm tired of not having anyone over to visit our house.&nbsp;</div><div>I'm tired of the looks and stares of others.&nbsp;</div><div>I'm tired of fighting for a local classroom placement for my son since our local school doesn't provide an autism class.&nbsp;</div><div>I'm tired of seeing friends on Facebook and other social media talking about their great vacation or dinner out or visit to the museum. &nbsp;</div><div>I'm tired of scouring ebay for toys that ceased to be produced ten years ago. &nbsp;(although I do consider it a victory when I find one). &nbsp;</div><div>I'm tired of trying to explain to my son that they just don't make them anymore and watching him meltdown because he doesn't understand that concept.&nbsp;</div><div>I'm tired of being hit.&nbsp;</div><div>I'm tired of other family members who chose to walk out on us telling me "it's my fault". &nbsp;I don't consider you to be "my fault". &nbsp;You are just there, like a tossed away beer bottle on my lawn.&nbsp;</div><div><br></div><div>I'm tired of looking like crap. &nbsp;</div><div>I'm tired of not giving a darn that I look like crap. &nbsp;I used to care.&nbsp;</div><div>I'm tired of not laughing. &nbsp;Of course, you would not understand that one. &nbsp;Or maybe you secretly laugh at us.</div><div><br></div><div>I'm tired of eating or should I say "inhaling" my food. &nbsp;There is always a behavior or a meltdown that needs attended to at that time.&nbsp;</div><div><br></div><div>I'm 56 years old. &nbsp;I'm tired. &nbsp;I'm not dead yet but wonder how long I can carry on. &nbsp;My son is 16. I'm tired of worrying about how he will survive when I'm gone. &nbsp;</div><div><br></div><div>I'm tired of coming up with creative ways to thwart a crying situation or meltdown. &nbsp;I'd much prefer to come up with creative party ideas or themes for college essays for my son.&nbsp;</div><div><br></div><div>I'm tired of wiping butts. &nbsp;However I will say that in this regard I consider myself lucky as so many other autism moms are still carrying diaper bags. &nbsp;</div><div><br></div><div>I assume by now you get the picture. &nbsp;I'm tired. &nbsp;I'm exhausted. &nbsp;Mentally. &nbsp;Physically. &nbsp;Emotionally. &nbsp;Creatively. &nbsp;</div><div><br></div><div>I'm tired in every aspect, regard and measure of my life.</div><div><br></div><div>Lastly, I'M TIRED OF TALKING ABOUT YOU!!!!</div><div><br></div><div>But don't despair. &nbsp;I won't quit. &nbsp;I won't give up. &nbsp;I won't change my number. &nbsp;Please don't feel obligated to call again. &nbsp;I &nbsp;will simply push the "ignore" button. &nbsp;And I will carry on with the mindset that the things that appears to be killing me, may be the thing that will save me.</div>joeybearsmomhttp://www.blogger.com/profile/17312273803247244366noreply@blogger.com0tag:blogger.com,1999:blog-6149215692860835618.post-27374132315341961932014-08-27T18:53:00.001-07:002014-08-27T18:53:15.121-07:00Autism: Soup du jour<div><br></div><div><br></div><div><div class="separator" style="clear: both;"><a href="https://lh4.googleusercontent.com/-KJgdTI9zqNo/U_6LiCvJQWI/AAAAAAAAG-M/kFC8ne7jvi0/s640/blogger-image-703378858.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh4.googleusercontent.com/-KJgdTI9zqNo/U_6LiCvJQWI/AAAAAAAAG-M/kFC8ne7jvi0/s640/blogger-image-703378858.jpg"></a></div><br></div><div><br></div><div><br></div><div>Autism: &nbsp;Soup du jour</div><div>by Pamela Mari&nbsp;</div><div><br></div><div>I've seen it written by many autism experts that if a child on the spectrum expresses a desire to learn, or a talent for a given activity, that should be fostered and encouraged. &nbsp;I suppose tonite's activity falls under that umbrella.&nbsp;</div><div><br></div><div>My son was watching "Barney" wherein the story of "Stone Soup" was acted out by the children. &nbsp;If you are unfamiliar with Stone Soup, the plot is that a traveler teaches a group of farmers how to make soup from a stone. &nbsp;The idea is that by sharing everyone benefits.&nbsp;</div><div><br></div><div>It's 9pm on Tuesday nite. &nbsp;Second day back to school after summer vacation. &nbsp;A lot of getting back into the necessary morning routines and getting away from staying up late and getting up late.&nbsp;</div><div><br></div><div>I leave the room for a moment and come back to find a chef's delight of vegetables on my stove. &nbsp;Celery, potatoes, carrots, tomatoes. &nbsp;Joey has garnered from the fridge all the ingredients he wants to use to make "stone soup". &nbsp;</div><div><br></div><div>As mentioned, it's 9pm. &nbsp;We have to get ready for the next day of school and it's hard enough to get my son with autism to separate from preferred activities. &nbsp;I can see this "super soup" making us way too late in getting to bed. &nbsp;Why do kids always wait until the middle of the night to request help with a project? &nbsp;What's wrong with asking for help at 4pm? &nbsp;</div><div><br></div><div>He seemed to be however, proud of himself for finding all the ingredients needed for the soup so I went along with it. &nbsp;He enjoyed adding the veggies to the pot and even went back to the fridge to look for additional goodies to add to the soup. &nbsp;Plus it seemed to me to be a more thought producing activity than sitting at the VCR scripting. &nbsp;</div><div><br></div><div>"You can eat vegetable soup and it will get rid of your "suds", he told me. &nbsp;(Spongebob Squarepants refers to a head cold as "the suds".&nbsp;</div><div>I think we set the land speed record for making a pot of homemade soup. &nbsp;It wasn't half bad either. &nbsp;</div><div><br></div><div>It was one of those "pick your battles" moments. &nbsp;I'm glad I didn't choose to quote the Seinfeld episode and say "no soup for you!"</div><div><br></div><div><br></div><div><div class="separator" style="clear: both;"><a href="https://lh5.googleusercontent.com/-abmQwSHWpRw/U_6LhEzeskI/AAAAAAAAG-E/p4n7-fcfHOQ/s640/blogger-image--1933599689.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh5.googleusercontent.com/-abmQwSHWpRw/U_6LhEzeskI/AAAAAAAAG-E/p4n7-fcfHOQ/s640/blogger-image--1933599689.jpg"></a></div><br></div>joeybearsmomhttp://www.blogger.com/profile/17312273803247244366noreply@blogger.com0tag:blogger.com,1999:blog-6149215692860835618.post-10339145121057634152014-07-19T20:02:00.001-07:002014-07-19T20:05:06.942-07:00Autism: I Forgot The Jelly Beans<div>Autism: &nbsp;I Forgot the Jellybeans&nbsp;</div><div><br></div><div>By Pamela Mari&nbsp;</div><div><br></div><div>So how do you keep a 16 year old son who is blind and has autism occupied at home during the summer? &nbsp;It's not easy and the boredom turns into frustration and down right crankiness.&nbsp;</div><div><br></div><div>Yesterday when my son remarked that he wanted to make a chocolate cake with chocolate icing I replied "yes of course we can do that." &nbsp;He noted though that it must have the following decorations: &nbsp;jellybeans, gumdrops, gunk of chocolate, &nbsp;(gunk of chocolate equals chunk of chocolate) M&amp;Ms and sprinkles and gummy worms.&nbsp;</div><div><br></div><div>At the supermarket I hit the lose candy isle to garner my supplies. &nbsp;Twenty-seven cents worth of gummy worms. &nbsp;A small bag of M&amp;Ms. &nbsp;A small bag of gum drops. &nbsp;The gunk of chocolate I knew I had left over at home in a zip lock bag from Easter when we received a large hollow &nbsp;Easter egg. &nbsp;</div><div><br></div><div>Today is a very boring day so I offered to make the cake with him. &nbsp;He wanted no parts of "cracking" the eggs for the cake mix. &nbsp;</div><div><br></div><div>"We have to make sure it cools properly" he mentions. &nbsp;(A script from a video, but appropriate.) &nbsp;As evening approaches I tell him he needs to help me decorate the cake. &nbsp;He helps in spreading the icing on to the best of his ability considering he can't see what he's doing. &nbsp;</div><div><br></div><div>I offer up the decorations. &nbsp;Gummy worms. &nbsp;Gum drops. &nbsp;Sprinkles. &nbsp;M&amp;Ms. &nbsp;For "gunk" of chocolate I used a few left over Girl Scout Thin Mint cookies - just as good.&nbsp;</div><div>"We need the jellybeans" he reminds me. &nbsp;</div><div>INSERT IMPENDING DOOM MUSIC FROM JAWS WHERE SHARK IS HEADING FOR BOAT.&nbsp;</div><div><br></div><div>I FORGOT THE JELLY BEANS!!!!!!</div><div><br></div><div>Now thus far this has been a pleasant, no meltdown activity and I'm determined to keep it so. &nbsp;Mommy brain goes into overdrive. &nbsp;"Where in the heck can I find some jellybeans?". &nbsp;I dig frantically through the cupboard thinking I may have stashed a few for just this type of situation but alas, none to be found. &nbsp;Ok. &nbsp;Think. &nbsp;Think. &nbsp;Jelly beans equal Easter. &nbsp;I sprint down to the basement where I stash the Easter baskets. &nbsp;I dig to the bottom of the plastic easter grass and retrieve the golden treasure-a handful of jelly beans. &nbsp;</div><div><br></div><div>Blood pressure back to normal, I ascend to the first level of the house and deliver the required final decoration. &nbsp;He is pleased and finishes decorating the cake. &nbsp;I'm the only one who is going to eat the cake anyway and I'm gonna scrape off all the excess sugar before I do so it doesn't matter to me how old the jelly beans are. &nbsp;</div><div><br></div><div>Note to self: &nbsp;Mom's memory is nothing compared to my son's. &nbsp;Always write down what you need from the store. The Easter Bunny only comes once a year.&nbsp;</div><div><br></div><div><br></div><div><br></div><div><br></div><div><br></div><br><div class="separator" style="clear: both;"><a href="https://lh6.googleusercontent.com/-xGzaDb3hJO8/U8sxuSLJK-I/AAAAAAAAG90/2-aIgO-1O4w/s640/blogger-image-1020598961.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh6.googleusercontent.com/-xGzaDb3hJO8/U8sxuSLJK-I/AAAAAAAAG90/2-aIgO-1O4w/s640/blogger-image-1020598961.jpg"></a></div>joeybearsmomhttp://www.blogger.com/profile/17312273803247244366noreply@blogger.com0tag:blogger.com,1999:blog-6149215692860835618.post-5452585867662614272014-06-07T17:35:00.001-07:002014-06-07T17:35:24.776-07:00AUTISM: "HE'S NOT NORMAL" YOU SAY?<br><div class="separator" style="clear: both;"><a href="https://lh4.googleusercontent.com/-hiLvDpa2L54/U5OvyzSxBEI/AAAAAAAAG9g/j_UV1ZIwE1w/s640/blogger-image-1605468821.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh4.googleusercontent.com/-hiLvDpa2L54/U5OvyzSxBEI/AAAAAAAAG9g/j_UV1ZIwE1w/s640/blogger-image-1605468821.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;">Autism: "He's Not NORMAL you say"</div><div class="separator" style="clear: both;">by Pamela Mari</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">This week I drug myself to my doctor on dual purpose. &nbsp;The first, to have my blood pressure checked as per Doctor's orders, and second to ask why I've had fever, aches, chills and general beat by a stick feeling for a few days.&nbsp;</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">Don't get me wrong, I LOVE my Doctor. &nbsp;He's highly intelligent. &nbsp;He's calm and compassionate. &nbsp;He listens intently to complaints about things not necessarily connected to the reason for the visit itself.&nbsp;</div><div class="separator" style="clear: both;">I feel fortunate to have found him. &nbsp;</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">And, he always asks about my son with autism. &nbsp;This visit we started talking about why a person would complain of not being able to have a bodily function like, "I can't swallow, I can't hear" etc. when no medical evidence exits to support that complaint.&nbsp;</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">Then, out it came "Well let's face it" he said, "HE'S NOT NORMAL".&nbsp;</div><div class="separator" style="clear: both;">nor·mal&nbsp;</div><div class="separator" style="clear: both;">adjective</div><div class="separator" style="clear: both;">1.</div><div class="separator" style="clear: both;">conforming to the standard or the common type; usual; not abnormal; regular; natural.</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">It didn't hit me till I got home and I'm not sure if I'm offended or not? &nbsp;Of course, I suppose my son with Autism is "not normal". &nbsp;You would think though that someone in the medical field would be a little more word choosey when speaking to an autism mom. &nbsp;What ever happened to "he doesn't perceive the world the same as we do" or&nbsp;</div><div class="separator" style="clear: both;">"his reasons for things may not be immediately apparent to us" or</div><div class="separator" style="clear: both;">"we may not be understanding his rationale for doing what he is doing". &nbsp;</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">Yes I am painfully aware that rewinding ten seconds of a video tape over and over again: &nbsp;is not normal.&nbsp;</div><div class="separator" style="clear: both;">I'm aware that only having a 3 item diet: is not normal</div><div class="separator" style="clear: both;">I'm aware that having a dislike for certain common words: is not normal.</div><div class="separator" style="clear: both;">I'm aware that pulling your shorts down at the McD's drive thru</div><div class="separator" style="clear: both;">because your butt is sweaty: is not normal.&nbsp;</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">I am painfully, agonizingly, cant sleep at night, gray hair and wrinkles, 30 lbs lighter - aware.&nbsp;</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">Or - is it just a word? &nbsp;Should I take no offense to it? But then I think would someone say, "well SGT Baker, we know that you cannot ride the city bus because your lost your lower limbs in battle and you're not NORMAL?</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">Or would the sports broadcasters say: We are so proud of the American wheelchairs athletes and what they've accomplished here today even though they're not NORMAL? &nbsp;HELL NO they would not. &nbsp;So we do we only use that term for folks with developmental disabilities?&nbsp;</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">Since I've left the Dr's office the wound from the knife I felt stab me in the stomach has healed a bit. &nbsp;Do I owe it to the other autie moms to point this out nicely to my Dr? &nbsp;Perhaps I will.&nbsp;</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><br></div></div>joeybearsmomhttp://www.blogger.com/profile/17312273803247244366noreply@blogger.com0tag:blogger.com,1999:blog-6149215692860835618.post-22749452228146773992014-05-29T19:55:00.001-07:002014-05-29T19:55:17.620-07:00DEAR AUTISM-REGARDING YOUR ACTIONS OF TODAY<div><div class="separator" style="clear: both;"><br></div></div><div><br></div><div><a href="https://lh5.googleusercontent.com/-cly-yaHooF8/U4fzFN6Jq6I/AAAAAAAAG9Q/uaq30QH9et8/s640/blogger-image--1262646831.jpg" imageanchor="1" style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif; margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh5.googleusercontent.com/-cly-yaHooF8/U4fzFN6Jq6I/AAAAAAAAG9Q/uaq30QH9et8/s640/blogger-image--1262646831.jpg"></a></div><div><br></div><div><br></div><div>DEAR AUTISM: REGARDING YOUR ACTIONS OF TODAY&nbsp;</div><div>by Pamela Mari&nbsp;</div><div>Dear Autism:</div><div><br></div><div>Regarding your actions of today I am compelled to contact you. &nbsp;This morning at home was nothing short of heart wrenching and I thought I was going to pass out for sure. &nbsp;These meltdowns are starting to kill me. &nbsp;Thank go we didn't have school this morning, however, we did have a very important eye doctor appointment in the afternoon.&nbsp;</div><div><br></div><div>By 1pm I managed to get my son back on the semi-quiet track and myself in a state of semi-functionality to get dressed for the appointment. &nbsp;These visits are always hard for my son. &nbsp;You couldn't have crawled back into your hole and left us alone for today? &nbsp;</div><div><br></div><div>We managed to make it to the Dr's on time and the wait was not long. &nbsp;However, when the Dr appeared in the room in his typical friendly manner, your compadre "sensory issues" slinked into the room along with you and when the Dr's voice when UP AND DOWN, it set my son off on a mega-meltdown. &nbsp;I'm tired of having to bring an actual "sign" with me to appointments that says:</div><div><br></div><div>AUTISM TRIGGERS - PLEASE DO NOT SAY THESE WORDS AND PLEASE DO NOT TALK IN KINDERGARTEN CIRCLE TIME SQUEAKY VOICE! &nbsp;</div><div><br></div><div>Sometimes I just plain forget to warn people. &nbsp;You could have reminded me! &nbsp;It was too late. &nbsp;My son was off in a full blown, cursing, crying meltdown. &nbsp;Dr. and I left the room and left Dad to deal with the situation.&nbsp;</div><div><br></div><div>I try to retain my composure to go to the appointment setting desk. &nbsp;I can hear my son, still escalated in the &nbsp;exam room. &nbsp;</div><div><br></div><div>I'll have you know though, Autism, that by handing me lemons today, I went right on and made lemonade. &nbsp;I never pass up an opportunity to explain to any living body standing still, about autism. &nbsp;I explain that the sound of the dr's voice lilting up and down is like the sound of fingernails on a chalkboard to my son. &nbsp;</div><div><br></div><div>Most folks listen and appear truly interested. &nbsp;Perhaps they are just being polite but I don't really care. &nbsp;They may retain one thought that I have communicated and pass it on to someone else in their life. &nbsp;One more person educated. &nbsp;</div><div><br></div><div>So in short, I wanted to let you know that I understand your presence is always there, looming around to create another upsetting situation. &nbsp;But be warned I will not allow you to masquerade under the label of "bad kid" or "terrible parent". &nbsp;I will tell all that I meet of you. Don't let it go to your head - I don't paint a pretty picture of you.&nbsp;</div><div><div class="separator" style="clear: both;"><br></div><br></div>joeybearsmomhttp://www.blogger.com/profile/17312273803247244366noreply@blogger.com0tag:blogger.com,1999:blog-6149215692860835618.post-27297338619405302392014-04-06T18:48:00.001-07:002014-04-06T18:48:53.620-07:00AUTISM: I HEARD SOMEONE CRYING TONITE<div>I heard someone crying tonite</div><div><br></div><div>A single autism parent</div><div>Tired</div><div>Alone</div><div>Worn out</div><div>Wanting out</div><div><br></div><div>Without solutions</div><div>For a better life for themselves</div><div>And their children</div><div><br></div><div>A desperate cry for help</div><div>From one who appears to have</div><div>The strength of many</div><div>But it is a silent scream</div><div><br></div><div>Some days some years</div><div>The pain outweighs the good</div><div><br></div><div>The rainbow. The silver lining</div><div>Cannot be summoned here</div><div>And the will to persevere dwindles</div><div><br></div><div>A friend extends a hand</div><div>Just one passerby views this life</div><div>And lingers for a moment</div><div>With only words to offer</div><div><br></div><div>The silent scream becomes pure silence</div><div>In word and action</div><div>And the cleansing tears flow</div><div><br></div><div>The heart will regain strength with the new day</div><div>Fueled by love</div><div>There is no stronger power</div><div>Share it widely, please</div><div><br></div><div><br></div><div><br></div><div><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-BpfijFiNhnE/U0IEA9itcpI/AAAAAAAAG88/o6zPYcnJIng/s640/blogger-image--1585933895.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-BpfijFiNhnE/U0IEA9itcpI/AAAAAAAAG88/o6zPYcnJIng/s640/blogger-image--1585933895.jpg"></a></div><br></div>joeybearsmomhttp://www.blogger.com/profile/17312273803247244366noreply@blogger.com0tag:blogger.com,1999:blog-6149215692860835618.post-24348857656388321182014-04-04T13:05:00.001-07:002014-04-04T13:08:00.924-07:00Autism: Who's Guto?"<div>Autism: &nbsp;"Who's Guto?"</div><div>by Pamela Rundall-Mari</div><div><br></div><div>It was one of those autie mom days. &nbsp;You know what I mean. &nbsp;The I can't take one more meltdown, one more script, one more request to repeat a script "say it, say it". &nbsp;The kind of day where you know if you lay your head down on the bed, you are so beyond comprehension tired, that you would be out like a light. And you know you can't do that. &nbsp;You are on day and night shift....alone.&nbsp;</div><div><br></div><div>My son with autism loves to listen to the "How to Draw" tutorials of Disney characters on YouTube. &nbsp;"I want "How to Draw Stitch" by BTSPRO." &nbsp;BTSPRO is an artist who I believe may have or still works for Disney. &nbsp;He takes you step by step through drawing the characters and we actually have replicated some of them following his directions.&nbsp;</div><div><br></div><div>"I want How to Draw Pluto", my son requests. &nbsp;I validate his request by repeating:</div><div><br></div><div>"OK...HOW TO DRAW GUTO". &nbsp; "GUTO"? &nbsp;WHO THE HECK IS "GUTO". &nbsp;I'm so tired it strikes me funnier than all get out and I actually snort laughing. &nbsp;I can't stop laughing at this stupid mistake I made. &nbsp;I'm trying to restrain myself and my son says "It's not Guto, It's Pluto". &nbsp;But, at the same time I catch him chuckling too.&nbsp;</div><div><br></div><div>He's laughing at the fact that I am laughing uncontrollably. &nbsp;I push my limits a bit and ask "Are you sure you don't want GUTO?". &nbsp;I'm so tired and the release of laughing was a pleasant experience. And the fact that we SHARED a laugh, a bit of common understanding, a moment of theory of mind, shall we say,was fabulous. &nbsp;I understand that you thought it was funny and I think it is funny too. &nbsp;This is a type of moment I wish for more often&nbsp;</div><div><br></div><div>Today, again with the Ipod asking for "How to Draw" videos. &nbsp;First it was "Chip" the Chipmunk. &nbsp;Then "I want How to Draw Tale"?? &nbsp;He catches himself every so quickly. &nbsp;"Not Tale, I mean Dale". &nbsp;</div><div>"Did you say Tale?" &nbsp;I ask. &nbsp;"Are you sure you don't want Guto?" &nbsp;I start to chuckle again. &nbsp;He returns the laugh. &nbsp;I'm gonna ride this one as long as I can. &nbsp;And poor Guto, whoever you are, it's all at your expense and I'm loving it!</div><div><br></div><div><br></div><br><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-4SDMDNxPdm4/Uz8RH4-ExFI/AAAAAAAAG8s/Aoqm_YYrdsE/s640/blogger-image--108900533.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-4SDMDNxPdm4/Uz8RH4-ExFI/AAAAAAAAG8s/Aoqm_YYrdsE/s640/blogger-image--108900533.jpg"></a></div>joeybearsmomhttp://www.blogger.com/profile/17312273803247244366noreply@blogger.com0tag:blogger.com,1999:blog-6149215692860835618.post-67943126828826050832014-03-14T20:11:00.003-07:002014-03-14T20:22:53.699-07:00Autism: For Once Everything Turned Out PerfectAUTISM: &nbsp;FOR ONCE EVERYTHING TURNED OUT PERFECT<br>by Pamela Mari<br><br>On bad days with autism it's hard to remember that there are in fact, good days. &nbsp;The other day was no exception but the outcome made it all worth it.<br><br>My son had been bugging me to play a computer game with him. &nbsp;Bear in mind that he can no longer see due to a horrible health condition. &nbsp;So I am his eyes. &nbsp;The game was a a Jump Start brand game and a relatively old version at that. &nbsp;We have a desktop computer in our sun room that runs an old version of Windows just to accommodate his "old" pc games. <br><br>We start the game. &nbsp;You have to pick a pet and then play other "mini games" to win prizes for the pet. &nbsp;Then you get to fly the pet to a "new home" via hot air balloon. There are about 8 pets total.<br><br>A few years ago I went to a Best Buy store looking for some item my son had requested and I told the salesman we had some of the series but my son "had to have them all". &nbsp;"Oh, he's a completist" he replied.<br><br>Completist: &nbsp;noun<br>collector who attempts to collect an example of every item in a particular field.<br><br>While this is true of my son and mom can attest to trying to provide all the items in each particular collection, that's another blog.<br><br>I would say he's also:<br><br>A Finisher:<br>1. To arrive at or attain the end of: finish a race.<br><br>You can't just stop in the middle of the game. &nbsp;YOU MUST FINISH. <br><br>With that in mind we muddle through the game. &nbsp;We've got a few "pets" under our belt when all of a sudden, the game crashes. <br><br>I felt my heart and all my other internal organs, sink to my feet. &nbsp;I knew what was coming. &nbsp;The meltdown ensued. &nbsp;The offering of "we can start again" did nothing. &nbsp;I suggested, wondering if it was the program itself, or the old computer that was causing the problem, that we try again tomorrow in the bedroom on that desktop computer. &nbsp;As the words exited my mouth I thought "oh God, what if the program won't run on that one?" &nbsp;It runs a newer version of Windows. &nbsp;But tomorrow is another day.<br><br>So, as it will, tomorrow came. &nbsp;Predictably so my son headed for the sun room to take another shot at the "unfinished game". &nbsp;I quickly grabbed the CD and ran to the bedroom. &nbsp;I inserted the disc and low and behold it loaded. "Let's try it in your room today" I announced. And so we did.<br><br>I'm so desperate for this darn game to work and to be able to "finish" that I start clocking how long it takes for each "pet" to finish his appointed duties before we move on to the next one. &nbsp;My heart is in my mouth that we can finish the game before another "crash" happens.&nbsp;<div><br>Ok so you have to make the balloon animals, and line up the animals in the correct size order and give the pet his treat and then you can fly away in the hot air balloon. &nbsp;But being the "completist" that he is, my son has to use each option, that while available, is not necessarily needed to move on to the next animal. &nbsp;Meaning, he has to stop and listen to "the itsy bitsy spider" and "barn house rock" before we can fly away in the balloon. <br><br>And I as the "mouse operator" on this mission am</div><div><br>"WHITE KNUCKLING" hwīt'nŭk'əl, wīt'-) also white-knuck·led (-əld)<br>adj. Slang<br>Characterized by tense nervousness or apprehension:</div><div><br>my way through this game.<br><br>We finally train and adopt out the last "pet" and the words that I seldom hear make the whole nerve wracking, nail biting experience seem like a walk in the park.<br><br>As he leaves the computer and walks to the kitchen my son says "For once everything turned out perfect!".<br>"Thanks for playing with me!"<br><br>Was it worth it? &nbsp;Oh yeah and I could not feel more "complete".<br><div><br></div><br><div class="separator" style="clear: both;"><a href="https://lh6.googleusercontent.com/-aq76V0FQ_Q0/UyPFUQ8JPRI/AAAAAAAAG8c/kh7PrTkHN8U/s640/blogger-image--382086902.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh6.googleusercontent.com/-aq76V0FQ_Q0/UyPFUQ8JPRI/AAAAAAAAG8c/kh7PrTkHN8U/s640/blogger-image--382086902.jpg"></a></div></div>joeybearsmomhttp://www.blogger.com/profile/17312273803247244366noreply@blogger.com0tag:blogger.com,1999:blog-6149215692860835618.post-38299908084876861662014-02-22T15:16:00.001-08:002014-02-28T18:58:34.252-08:00Autism: "Doobee Or Not Doobee?" - And Never The Twain Shall Meet<div class="separator" style="clear: both;"></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><br></div><br>Autism: &nbsp;"Doobee Or Not Doobee?" - And Never The Twain Shall Meet<br><br>My sister in law called me the other day with a question. &nbsp;As the mom of two neurotypical teenage boys, she faces her own unique set of challenges, totally dissimilar to mine, as I am an autism mom.<br><br>The situation was a friend of her eldest son had advertised himself as "smoking pot". &nbsp;Whether or not this was actually true remains to be proved, however she was perplexed as to what to instruct her son to do regarding continuing to "hang out" with this other teenager.<br><br>She posed the question to me asking what would I do if I found that one of my son's friends was using drugs. &nbsp;Now, remember my son is 16 also but has autism. <br><br><br><div class="separator" style="clear: both;"><a href="https://lh6.googleusercontent.com/-Op1qAa5OrDM/UwksEeTz6hI/AAAAAAAAG7I/26OHEJJXoUA/s640/blogger-image--312928892.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh6.googleusercontent.com/-Op1qAa5OrDM/UwksEeTz6hI/AAAAAAAAG7I/26OHEJJXoUA/s640/blogger-image--312928892.jpg"></a></div><br><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-ZlNdrSmQ2rs/UwksRx8OHxI/AAAAAAAAG7Q/C5VZ_ANpUCE/s640/blogger-image--1489857447.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-ZlNdrSmQ2rs/UwksRx8OHxI/AAAAAAAAG7Q/C5VZ_ANpUCE/s640/blogger-image--1489857447.jpg"></a></div><br><div class="separator" style="clear: both;"></div><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-zM7OOT-Km7Q/UwkvW-h-1zI/AAAAAAAAG7w/KaGng28esO0/s640/blogger-image-257042182.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-zM7OOT-Km7Q/UwkvW-h-1zI/AAAAAAAAG7w/KaGng28esO0/s640/blogger-image-257042182.jpg"></a></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh4.googleusercontent.com/-dg1MFNxfaq4/Uwk0mEc2kWI/AAAAAAAAG8I/y0zDiSrmOCA/s640/blogger-image--534329194.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh4.googleusercontent.com/-dg1MFNxfaq4/Uwk0mEc2kWI/AAAAAAAAG8I/y0zDiSrmOCA/s640/blogger-image--534329194.jpg"></a></div><br></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh4.googleusercontent.com/-B1ldlA3xgvA/UwkyQbq1lpI/AAAAAAAAG78/4AwizuqylT0/s640/blogger-image-1574331623.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh4.googleusercontent.com/-B1ldlA3xgvA/UwkyQbq1lpI/AAAAAAAAG78/4AwizuqylT0/s640/blogger-image-1574331623.jpg"></a></div><br></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">So, I admit when she first posed the question my mouth was open but nothing came out. &nbsp;I didn't have an answer for her. &nbsp;I knew she wasn't dwelling on the fact that Joey has autism and the likelihood of one of his friends smoking pot, though not &nbsp;impossible, is highly unlikely. &nbsp;</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">While this is not necessarily a situation in a young life worth celebrating, I was left with that tugging feeling, knowing that this is just one more problem that I as an autism mom, will probably NOT encounter. &nbsp;</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">We ended the text conversation and I was left staring at the mental image of that list that &nbsp;some autism moms know all too well. &nbsp;The "things my kid will probably never do" list.&nbsp;</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">Things like:</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">Worrying about getting driver's license</div><div class="separator" style="clear: both;">Not having enough money to buy his own car</div><div class="separator" style="clear: both;">Being upset about finding a date for the prom</div><div class="separator" style="clear: both;">Not making the track, football or basketball team&nbsp;</div><div class="separator" style="clear: both;">Deciding what college to apply to&nbsp;</div><div class="separator" style="clear: both;">Having a girlfriend and getting dumped by that girlfriend</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">I thought of the two young men, my son and my nephew. &nbsp;I thought of the dichotomy between a neurotypical teenager and one with autism. &nbsp;Both approximately the same age but living in two different worlds. &nbsp;</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">Is my son, &nbsp;in a way, better off that he will not have to deal &nbsp;with some of these normal passages into adulthood? &nbsp;Is his innocence to his betterment? &nbsp;Is worrying about missing a "Finding Nemo " VHS tape less stressful than worrying about "finding a job"?</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">Or is it me? &nbsp;My Mom used to say " you can't miss what you never had". &nbsp;Perhaps my son will not feel the loss of some of these average teenage experiences. &nbsp; But I will feel the loss. &nbsp;I must stop imposing my perception of what his life should be compared to other teens. &nbsp; I must let him live his own life on his own terms. &nbsp; The two young adults are not the same and never will be...and never the twain shall meet.</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Oh, East is&nbsp;<br>East, and West is West, and never the twain shall meet,<br>Till Earth and Sky stand presently at God's great Judgment Seat;<br>But there is neither East nor West, Border, nor Breed, nor Birth,<br>When two strong men stand face to face,<br>tho' they come from the ends of the earth!<br>by: Rudyard Kipling</span></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><br></div></div></div></div>joeybearsmomhttp://www.blogger.com/profile/17312273803247244366noreply@blogger.com0tag:blogger.com,1999:blog-6149215692860835618.post-86273835552170449792014-02-09T06:49:00.001-08:002014-02-17T18:47:05.443-08:00Autism: Play Nice<div>Autism: &nbsp;Play Nice!</div><div><br></div><div>When teaching our children, neuro typical or children with autism, what are the things we stress when it comes to dealing with others?</div><div><br></div><div>PLAY NICE!</div><div>SHARE!</div><div>DONT SAY MEAN THINGS TO OTHERS!</div><div>IT'S NOT ABOUT WINNING!</div><div>NO NAME CALLING!</div><div>NO BULLYING!</div><div>EVERYONE HAS THEIR OWN WAY OF DOING THINGS!</div><div><br></div><div>Simple everyday rules and guidelines such as these are the mindset we try to impart to our children. &nbsp;Children on the autism spectrum struggle with these concepts more than other children. The interpretation of these words may be obvious to us but not as easy to decipher if you are a child on the spectrum. We as adults are charged with explaining the meaning of these phrases to them and &nbsp;giving examples of how to implement them in their daily lives.&nbsp;</div><div><br></div><div>I believe it's called: SOCIAL SKILLS.</div><div><br></div><div>So why then why do I see grown adults, most of them not on the spectrum totally ignoring these rules? &nbsp;And to make it worse, these are folks in the autism community. &nbsp;Lately I've seen family members of persons on the spectrum, reduced to tears over the rude, hurtful, bullying comments made by others. &nbsp;</div><div><br></div><div>We are all on the same team so where is the concept of "play fair" amongst us? &nbsp;</div><div><br></div><div>As we all communicate in the hopes of providing each other knowledge and support, can we not remember that&nbsp;<span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">"we all have our own way of doing things?" &nbsp;If you do not agree with a parent with regard to a treatment, medicine or behavioral approach, by all means say so, but be constructive, not destructive.&nbsp;</span></div><div><br></div><div>Every parent has their own vision for their child. &nbsp;You do not live in their house, you do not know their child as they do. Of course I've seen parents talk about treatments or procedures that they use in the hopes of helping their child that I, myself, would never dream of trying. &nbsp;But that's "MY" opinion. &nbsp;And you know what they say about "opinions". &nbsp;</div><div><br></div><div>So as you hit the "playground" of life tomorrow be kind to your friends. &nbsp;It's about "winning" for each family member not "winning" the argument. &nbsp;It's about giving the "high five", not pointing the finger. &nbsp;It's not "popular" vs. "unpopular" team and it's certainly not</div><div>DODGEBALL! &nbsp; &nbsp; &nbsp; &nbsp; &nbsp; &nbsp; &nbsp; &nbsp; &nbsp; &nbsp; &nbsp; &nbsp; &nbsp; &nbsp; &nbsp; &nbsp; &nbsp; &nbsp; &nbsp; &nbsp; &nbsp; &nbsp; &nbsp; &nbsp; &nbsp; &nbsp; &nbsp; &nbsp; &nbsp; &nbsp; &nbsp; &nbsp; &nbsp; &nbsp; &nbsp; &nbsp; &nbsp; &nbsp;</div>joeybearsmomhttp://www.blogger.com/profile/17312273803247244366noreply@blogger.com0tag:blogger.com,1999:blog-6149215692860835618.post-45997758377262025212014-01-31T18:20:00.001-08:002014-01-31T18:24:35.772-08:00Autism: My Pom-Poms Are Flat<div>Autism: &nbsp;My Pom-Poms Are Flat</div><div>by Pamela Mari&nbsp;</div><div><br></div><div><br></div><div>"We are autie mommies"</div><div>"Mighty, mighty mommies"</div><div>"Everywhere we go&nbsp;</div><div>people wanna know"</div><div>"Who we are?"</div><div>"So we tell them" Hooray!</div><div><br></div><div>I was not a cheerleader in high school. &nbsp;I was in drama, theatre and served on the newspaper staff. &nbsp;I vaguely remember trying out for cheerleading. &nbsp;I think one of the tests was to run up and down the bleachers without breaking your neck. &nbsp;After which, I departed the gym, knowing this group was not for me. &nbsp;</div><div><br></div><div>In a conversation with another autism mom earlier this month we discussed the ongoing "cheerleading" we do for our kids. "Yeah, great job". "You can do it". &nbsp;" Don't give up, we will get there" "One more try honey". &nbsp;"Don't let the angry feelings get you." &nbsp;"I am so proud of you." &nbsp;"I will never give up on you." &nbsp;</div><div><br></div><div>The list of encouragements is endless.&nbsp;</div><div><br></div><div>It must have been a relatively bad day with autism at our house. &nbsp;I felt as if I had climbed to the top of the "cheerleaders" pyramid, done the flip and landed flat on my butt. &nbsp;Where was that person that was supposed to catch ME? &nbsp;I remember saying to my friend "that's it...my pom poms are flat". &nbsp;There's no playbook, no coach, and no spare players on the bench. &nbsp;At our house it's a one man team, and a one man cheering section. &nbsp;There's no time outs, we are always in overtime. &nbsp;I am the quarterback, the defense and the offense. &nbsp;I'm ready to throw in the proverbial "terrible towel". &nbsp;I have met the enemy and it has won.&nbsp;</div><div><br></div><div>My friend in her wisdom let me rant. "I've tried and I've tried", I told her, I've repeated this a million times and he still doesn't get it! &nbsp;</div><div><br></div><div>A seasoned veteran of the game she simply replied "Yes, but the million and tenth time, he will!</div><div><br></div><div>So here I go, with the Hail Mary pass into the fray chanting:&nbsp;</div><div>"We are autie mommies, mighty mighty mommies!</div><div><br></div><div><br></div><div><br></div><br><div class="separator" style="clear: both;"><a href="https://lh5.googleusercontent.com/-ROUXHhPLndw/Uuxa4gMiA9I/AAAAAAAAG64/hr_4E56Nanw/s640/blogger-image--1879486473.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh5.googleusercontent.com/-ROUXHhPLndw/Uuxa4gMiA9I/AAAAAAAAG64/hr_4E56Nanw/s640/blogger-image--1879486473.jpg"></a></div>joeybearsmomhttp://www.blogger.com/profile/17312273803247244366noreply@blogger.com0tag:blogger.com,1999:blog-6149215692860835618.post-43992526578966019502014-01-20T17:07:00.001-08:002014-01-20T17:07:25.457-08:00Autism: The Mother of Invention<div>Autism: &nbsp;The Mother of Invention&nbsp;</div><div>by Pamela Mari</div><div><br></div><div>I guess I shouldn't complain. &nbsp;My son with autism doesn't ask for $200 sneakers. &nbsp;He doesn't ask for $500 gaming systems. &nbsp;I don't have to listen to him lamenting about the fact that he doesn't have the latest cell phone or computer game. &nbsp;His requests are relatively simple with one exception. &nbsp;He usually asks for things that "don't exist". &nbsp;</div><div><br></div><div>By this I mean he asks for things that he sees in videos. &nbsp;He obsesses about creations that no toy maker in the world gives a darn about and certainly isn't going to put into production. &nbsp;</div><div><br></div><div>In so wanting to give him what he desires I have become a creator of the un-purchasable. &nbsp;My Mom used to tell me&nbsp;</div><div>"necessity is the mother of invention". &nbsp;</div><div><br></div><div>NECESSITY IS THE MOTHER OF INVENTION:</div><div>proverb has been defined as– when the need for something becomes imperative, you are forced to find ways of getting or achieving it.[3</div><div><br></div><div>Very true at our house. &nbsp;</div><div><br></div><div>One example. Joey likes to watch Winnie The Pooh. &nbsp;There is an episode in which Tigger pretends to be "The Masked &nbsp; Defender" (or Offender, as I think Joey sometimes calls him). &nbsp;Tigger takes on the persona of Zorro and does battle with a runaway bale of hay sporting all types of junk that it acquires as it runs through the Hundred Acre Wood.&nbsp;</div><div><br></div><div>The intro to the cartoon mentions Piglet's new "stinky sidekick", which of course is the yucky bale of hay monster. &nbsp;Joey hears this as "stinky inside kick". &nbsp;So for years now he's been bugging me to build a "stinky inside kick". &nbsp;I've been putting him off for years. &nbsp;But this year I felt he'd waited long enough. &nbsp;I promised him we would make it at Halloween. &nbsp;We went to the local pumpkin and flower mart and bought a small bale of hay. &nbsp;But shortly thereafter he developed a case of conjunctivitis, which in our house are deadly words so I thought perhaps it better to not use an allergy laden mess of hay. &nbsp;I chose a cardboard box. &nbsp;This stinky inside kick had arms, &nbsp;supposed to be a garden tool and a plunger. &nbsp;I used a potatoe masher and a turkey baster. &nbsp;It needed a belt and sneakers. &nbsp;Belt made out of yarn and sneakers fashioned out of cardboard. &nbsp;But the real catch was it was supposed to drive wildly on a wagon. &nbsp;We have no wagon. &nbsp;So we used an office chair on wheels. &nbsp; The googly 3-D eyes were made of the bottoms of take out soda cups. &nbsp;Joey dressed himself as "The Masked Offender" by using a bathrobe, a belt, an old cowboy hat and winter gloves. &nbsp;He was ready to defeat the "stinky inside kick". &nbsp;</div><div><br></div><div>A more recent "invention" challenge was presented to me this week. &nbsp;In the movie "Lilo and Stitch: The Movie", Lilo and Stitch the alien, reanimate evil experiments like himself, by using a machine that utters: &nbsp;"Container ready", "Experiment 625 activated". &nbsp;The machine dispenses a small ball which they then drop in the bathtub and an evil experiment creature is created. I knew my son would not settle for my voice saying the computerized sounding voice, so I took my Iphone and recorded the segments from the movie. &nbsp;Now, to create a machine. &nbsp;Humm, I went to Radio Shack and got a small bluetooth speaker shaped like a can. &nbsp;I could then transmit the recorded lines to the speaker. &nbsp;But now, what to use for the experiment "pods". &nbsp;I got sour balls, the round candies, in the loose candy aisle at the supermarket. &nbsp;I only grabbed a handful because I don't particularly like "sour balls" and didn't want to be stuck with a lot of them after the activity. &nbsp;WRONG!!! &nbsp;Half way through the acting out of this scene I ran out of sour balls, I had to dig them out of the water and try to salvage them to be re-inserted in the water bath. &nbsp;Note to self: &nbsp;Next time buy enough "experiment pods". &nbsp;Nonetheless, he was pleased to hear the sound coming out of the speaker and it was successful.&nbsp;</div><div><br></div><div>And last but not least how could we forget the day Spongebob, Mr. Krabs, Squidward and Patrick venture onto &nbsp;"dry land" in a challenge issued by their friend "Sandy Cheeks" the Squirrel. &nbsp;This video scene shows the aforementioned characters taking on the form of puppets, on sticks as they blast out of the sea and onto dry land. &nbsp;This meant I had to create a Spongebob, Patrick Starfish, Squidward, Mr. Krabs and Sandy all in "puppet on a stick" format. &nbsp;Spongebob, Patrick and Squidward were all carved out of household cleaning sponges. &nbsp;Mr. Krabs was purchased in the seafood aisle of the supermarket, a real steamed crab. &nbsp;And dear Sandy Cheeks was last. &nbsp;She was shown as a real "hand puppet" in the video. &nbsp;I called the toy store in our town known for horribly expensive but rare and unusual toys. &nbsp;"Do you have a squirrel hand puppet?" &nbsp;"Ok, I'll be right over". &nbsp;After scoring Sandy at the toy store I brought her home to try to construct a "diving helmet" which she wears in Spongebob because she obviously is not a water creature, so she needs air. &nbsp;I cut the bottom off a spring water bottle and it fit her head just right. &nbsp;So now my son was able to play out all the characters just as they are shown in the video. &nbsp;</div><div><br></div><div>I'm so happy he's not into Spiderman!</div><div><div class="separator" style="clear: both;"><a href="https://lh5.googleusercontent.com/-SMXS7BnORz4/Ut3IS_XQ99I/AAAAAAAAG6o/6EXLYoLPl1I/s640/blogger-image-109575685.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh5.googleusercontent.com/-SMXS7BnORz4/Ut3IS_XQ99I/AAAAAAAAG6o/6EXLYoLPl1I/s640/blogger-image-109575685.jpg"></a></div><br></div>joeybearsmomhttp://www.blogger.com/profile/17312273803247244366noreply@blogger.com0tag:blogger.com,1999:blog-6149215692860835618.post-38596974748015110462014-01-12T18:51:00.001-08:002014-01-12T18:51:05.272-08:00Autism: Breaking the Sound Barrier<div>Autism: &nbsp;Breaking the Sound Barrier</div><div><br></div><div>I don't know why I always think I am the only one experiencing a certain behavior in my life with my son with autism. &nbsp;Before he was diagnosed, I thought it so peculiar and unique that he liked to rewind video tapes. &nbsp;I wondered why he did it until I stumbled upon a list of&nbsp;</div><div>"stereotypical" behaviors for autistic children, rewinding video tapes being one of them. &nbsp;</div><div><br></div><div>Last week on Facebook I read of how many other children will have multiple media sources, the TV, the DVD, the CD player, the computer, all running at the same time, which my son does also. &nbsp;Ok, guess I'm not alone in that one either.&nbsp;</div><div><br></div><div>But today I touch on the subject of "noise". Again, I cannot be alone in this situation with regard to autism and our kids. &nbsp;I think about the TV commercial where the homemaker answers the door to find a service man outside. &nbsp;In the background you see two children jumping on the couch, beating each other with "pool noodles" making a good deal of noise. &nbsp;We can assume this commercial portrays "regular" kids so sometimes I wonder&nbsp;</div><div>"am I just too old for this?" &nbsp;" do kids actually make this much noise?", "what about a family where they have numerous children of varying ages?" does it get this noisy at their homes? &nbsp;</div><div><br></div><div>At our house we have "good" noise and "bad" noise. &nbsp;"Good" noise is the type I am experiencing as I write this. &nbsp;My son is in a good mood. &nbsp;He's watching a video, and a dvd at the same time. &nbsp;We have Charlie Brown on the TV and Chicken Little - on the DVD. &nbsp;He's singing "Don't Go Breaking My Heart". &nbsp;This "good" noise is accompanied by him rocking the bar stool so that the feet slam against the ground, bam, bam, bam. &nbsp;As he is doing this he's also vocalizing some new verbal "stim" I guess it would be called "ooh, ooh, em, em, em". &nbsp; It's driving me nuts. &nbsp;I know he can't help it, but I cannot tune it out. &nbsp;As he's doing all this, he's smacking himself on the forehead. &nbsp;Another new one. &nbsp;And when time allows, poking his index finger on the counter, tap, tap, tap, tap. There is a ritualistic series to these movements but I can't honestly say I've tracked it yet. &nbsp;I have to admit though, many times this "good" noise, Spongebob yelling, Scooby Doo and Shaggy screaming all together, is too much for me. &nbsp;I can honestly say I know what "sensory overload" is. &nbsp;And I also think, that perhaps I am more sensitive to it than my son, or maybe it's a personalized thing, what bugs me does not bug him and vice versa.&nbsp;</div><div><br></div><div>Bad Noise: &nbsp;ca·coph·o·ny noun \ka-ˈkä-fə-nē, -ˈkȯ- also -ˈka-\</div><div>: unpleasant loud sounds</div><div><br></div><div>Best word to describe "bad noise" at our house. &nbsp;I'm sure I don't have to explain "bad noise" to other autism parents. &nbsp;The noise that goes with a meltdown, or at very least, an angry moment, a refusal or making no bones about the fact that my son is displeased with something. &nbsp;LOUD NOISE.&nbsp;</div><div><br></div><div>To the outside world though, all these noises must seem extreme. &nbsp;I've decided to "classify" them based on the possible thoughts of those who might hear them and not know the full situation inside our house.</div><div><br></div><div>GOOD NOISE:</div><div><br></div><div>1. &nbsp;Cartoon noise, Spongebob yelling, Patrick crying, or Squidward screaming "I gotta get out of here".&nbsp;</div><div>As a female TV reporter who came to our house last week said "When we walked on the porch, we figured there was a special needs person living here". &nbsp;"Oh, how intuitive of you!"</div><div><br></div><div>2. &nbsp;Banging on the counter: &nbsp;"hey I guess the neighbors must be installing new drywall".&nbsp;</div><div><br></div><div>3. &nbsp;Jumping on the bed: &nbsp;"they must feed that kid too much sugar"</div><div><br></div><div>BAD NOISE:</div><div><br></div><div>1. &nbsp;"But I Don't Wanna Go to School"....because this is a fully functional sentence most people assume he is just a spoiled brat and the "if that were my kid" thoughts and comments flow.</div><div><br></div><div>2. &nbsp;A sensory meltdown caused by a loud unexpected sound &nbsp;from either the computer or vhs : &nbsp;the stray cats run from the porch</div><div><br></div><div>3. &nbsp;A "who knows what caused it" meltdown including hitting and throwing objects: &nbsp;"the herd of deer crossing the property have jumped the fence to get to the other side of the road."</div><div><br></div><div>4. &nbsp;the combo meltdown: &nbsp;Mom committed some cardinal sin by saying the wrong word, or the wrong ending to a script, or god forbid the DVD player doesn't work or the gameboy gets stuck, topped off with puberty and a ton of other emotional issues: &nbsp;the real estate agent contracted to sell the $950,000.00 house built about 100 yards from us is realizing she will probably never sell the joint. &nbsp;</div><div><br></div><div>But there was a time when it was quiet here. &nbsp;About a year ago my son was very ill. &nbsp;It was very quiet here. &nbsp;An eery, scary, doom filled quiet. &nbsp;Without the physical energy or the mental desire to participate, there can be no noise. &nbsp;I longed for him to have the drive to engage in any of those "noisy" activities he used to. &nbsp;I swore at that point, that when he recovered, I would not complain about the "noise"....the "autism noise" as long as he was strong enough to produce it. &nbsp;</div><div><br></div><div>So, it's 10pm here and we have both Lilo and Stitch and Spongebob and Patrick on. &nbsp;Yes, it's getting on my nerves but.....I'll take it!</div><div><br></div><div><br></div><div><br></div>joeybearsmomhttp://www.blogger.com/profile/17312273803247244366noreply@blogger.com0tag:blogger.com,1999:blog-6149215692860835618.post-64177507201242508702013-12-27T19:06:00.001-08:002013-12-27T19:06:00.927-08:00Autism: A Christmas Kick In The Head<div>AUTISM: &nbsp;A CHRISTMAS KICK IN THE HEAD&nbsp;</div><div><br></div><div>Don't get me wrong I HATE AUTISM. I loathe it. &nbsp;I would give it away, throw it out for the trash, put it in the blender, burn in on the barbeque, well, you get my drift. &nbsp;I hate it for the moments, the experiences, the joy, it has stolen from my child. &nbsp;I hate it for the pain, the anguish, the confusion, the tears it has caused my child. &nbsp;For those who feel otherwise, that is fine. &nbsp;For those who view it as a blessing, a difference, I applaud you and support you 100%. &nbsp;I have not reached this level of thinking yet.&nbsp;</div><div><br></div><div>The past two years of our lives, my son's and mine, have been hell. &nbsp;He has lost his eyesight and his father. (No, his Dad did not die). I cannot explain either to him in terms that he is able to understand yet. &nbsp;He is so much stronger than I in that he takes on each day without the knowledge that I have, trusting, I suppose, in me. &nbsp;Through this 2 years I have been drop kicked by every emotion imaginable. &nbsp;Fear, anger, hatred, betrayal, doubt, mistrust, envy. &nbsp;I've been on the amusement park log flume ride of emotion and the boat never seems to pull into the starting area. &nbsp;It just keeps looping and looping around and trust me, I wanna get off. It's the joke about "show me a Mom who has never thought of taking the car keys, driving off and never coming back, and I'll show you a mom who can't drive. &nbsp;</div><div><br></div><div>But I can't drive off. &nbsp;He needs me. &nbsp;He needs me now more than ever. &nbsp;</div><div><br></div><div>But this Christmas in an unexpected moment I received a rather strong KICK IN THE HEAD. &nbsp;I began following a story on Facebook about a little girl in our state, 7 years old, whose days on earth were numbered due to a very rare form of leukemia. &nbsp;I read how the folks in her town rallied in numbers exceeding 8,000 people, to fulfill one of her last wishes...to hear Christmas carols being sung outside her home. &nbsp;I jumped on the prayer chain on Facebook for this child. &nbsp;Her family clung to the slightest hope for a miracle for her to pull through. &nbsp;She had been through so much in a short period of time, 7 months since her diagnosis. &nbsp;Christmas Eve, my son with autism and I retired for the night thinking of the gifts he would receive the next morning when Santa visited our house. &nbsp;</div><div><br></div><div>Her parents however spent the night in vigil over their precious child whose life hung in the balance.&nbsp;</div><div><br></div><div>I awoke Christmas Day and checked their Facebook page to find the worst. &nbsp;Their daughter had passed from this earth at 3:10 am. &nbsp;My heart sank. &nbsp;How will this family every have another enjoyable Christmas remembering this as the day they lost their child? &nbsp;</div><div><br></div><div>Like a kick in the head from a size 13 Army boot I realized. &nbsp;Yes, my child has autism, but I have him. &nbsp;I have him here on earth. &nbsp;I'm sure her parents would tolerate any form of loudness, hyperactivity, any meltdown, any repetitive behavior, any negative, annoying, tiring situation for the opportunity to spend time with their child, who is gone.&nbsp;</div><div><br></div><div>I vowed any moment in 2014 when I am feeling sorry for myself, when I'm exhausted from autism, when I'm saying "why my child" I will think of this family and this child. &nbsp;I'm realizing that sometimes miracles don't always immediately present themselves as such. &nbsp;You just need a kick in the head.&nbsp;</div><div><br></div>joeybearsmomhttp://www.blogger.com/profile/17312273803247244366noreply@blogger.com0tag:blogger.com,1999:blog-6149215692860835618.post-16742055601485867602013-12-03T15:55:00.001-08:002013-12-03T15:55:28.481-08:00Autism: No Leftovers Please<div>Autism: &nbsp;- NO LEFTOVERS PLEASE&nbsp;</div><div><br></div><div>With Thanksgiving being just slightly behind us I feel compelled to write this blog. &nbsp;I've avoided it for a long time. &nbsp;Reason? &nbsp;Somewhat to be private about what's going on in my and my son's life, somewhat on legal advice, so I will keep it clean.&nbsp;</div><div><br></div><div>This Thanksgiving was a tad different than the last. &nbsp;This year my son's health is somewhat better than last year and he was actually able to get out of bed and listen to (not watch) the Macy's Thanksgiving Parade. &nbsp;This is a tradition in our house and for his sake, even though he has lost his eyesight, I continue it. &nbsp;We wait for our favorite character balloons to come down the street. &nbsp;I describe them as they appear so he knows what's going on. &nbsp;I admit I embellish the line up with those characters he wants to be in the parade that are not. &nbsp;I suppose it gives credit to my creativity to come up with descriptions of "Little Bill", "Charlie Brown" "Barney" and other characters that are not really in the parade. &nbsp;I'm sure there are some that would disagree with me on this but it's my choice.&nbsp;</div><div><br></div><div>After the parade I start to work on the turkey and the other food items that only I will eat. &nbsp;My son has the typical self restricted autism diet. &nbsp;By the end of the day I am exhausted and wonder why I go to all this trouble for only one person to eat. &nbsp;Why only one person? &nbsp;Reason being my husband of 26 years left our household two years ago. &nbsp;My son, autistic and newly blind and myself are the leftovers.&nbsp;</div><div><br></div><div>Let's check the Wikipedia definition of leftovers:</div><div><br></div><div>Leftovers are the uneaten edible remains of a meal after the meal is over, and everyone has finished eating. Food scraps that are not considered edible (such as bones or the skins of some vegetables and fruits) are not regarded as leftovers, but rather as waste material; any remaining edible portions constitute the leftovers.</div><div>The ultimate fate of leftovers depends on where the meal was eaten, the preferences of the diner, and the prevailing social culture. Home cooking leftovers are often saved to be eaten later. This is facilitated by being in a private environment, with food preserving facilities such as airtight containers and refrigeration close at hand. Some leftover food can be eaten cold from the refrigerator, while others may be reheated in a microwave or a conventional oven, or mixed with additional ingredients and recooked to make a new dish such as bubble and squeak.</div><div><br></div><div>So allow me to compare the definition of "leftovers" with regard to food and that of "leftovers" with regard to a family.&nbsp;</div><div><br></div><div>The "uneaten edible remains after everyone has finished". &nbsp;The people you promised to love honor and cherish and rear, as in brining up a chid, that you leave remaining after you are "finished" with them.&nbsp;</div><div><br></div><div>The "ultimate fate of the leftovers depends on where the meal was eaten (this might mean if you are surrounded by &nbsp;extended family to help and support you or if you are left on your own). &nbsp;"The preferences of the diner" could this refer to how much of a darn the departing party gives to those left behind? &nbsp;"And the prevailing social culture") to me this means how society views what you have done to your family members and how well you will be accepted in society for having done so. &nbsp;From our perspective I would say that our society has lost all its morals and holds nothing sacred or honest anymore. &nbsp;The "it is what it is" motto prevails. &nbsp;</div><div><br></div><div>I spoke with another autism mom prior to Halloween this year. &nbsp;"You know" she said, " the divorce rate for autism families is 50%". &nbsp;So of course, I looked it up. Based on a study done by the Kennedy-Krieger Institute of Baltimore, MD, a premier facility serving autism families, the divorce rate for autism families is no higher than that of regular families.&nbsp;</div><div><br></div><div>So, do you blame it on the autism? &nbsp;Or something else? &nbsp;I do not know. &nbsp;I do know however that at the "new location" &nbsp;there are no meltdowns, no tantrums, no stacks of video tapes, no scripting, no ritualistic behaviors. &nbsp;There are no barriers to living. &nbsp;If one wants to jump in to car and take the kids to the movies, go for it. &nbsp;If one wants to have guests over for a dinner party, go for it. &nbsp;Wanna plan a long distance vacation, go for it. &nbsp;Want to have everything neat and tidy, of course we can. &nbsp;Want everyone to have their best, prettiest, glamorous, fashion conscious appearance. &nbsp;Yes we can do that, because, remember "people judge you by your appearance". &nbsp;God help us.&nbsp;</div><div><br></div><div>However, you forgot one thing. &nbsp;Back at home plate, (yes, pun totally intended) &nbsp;you left the stove on while you were out (from Lilo and Stitch). &nbsp;One of the leftovers is not doing well. &nbsp;Well really both of them are not doing well. &nbsp;The elder one who supported you until you became successful and self absorbed is alone and tired and stressed and yes, IT SHOWS. &nbsp;She, or maybe he ( could be both scenarios) is struggling as you cannot imagine to support a child that has his own struggles internally. &nbsp;A child that does not understand the change; how can he when the "elder" doesn't either? You have left her to explain the unexplainable. &nbsp;To deal with a broken heart and a child with a broken heart. &nbsp;You have left her to hear "you have to call Daddy" in the midst of a major meltdown. &nbsp;She cannot explain the reality of this situation to a child that does not understand anything other than "you are supposed to be there", a child who quotes the Tigger Movie "Why can't we go back and be a family again?". &nbsp;He speaks in scripts but speaks his heart as best he can. &nbsp;The pain in him is hard to watch. &nbsp;The leftovers are trying hard not to spoil.&nbsp;</div><div><br></div><div>Therefore with this Thanksgiving passed until next year, I beseech anyone having problems in their family and marriage living with autism. &nbsp;Do anything, do everything, try it all to salvage what was once the dream. &nbsp;Forget you ego and go to counseling, get a second outside opinion and guidance. &nbsp;And STOP THINKING ABOUT YOURSELF SOLELY. &nbsp;YOU HAVE LIVES IN YOUR HANDS. &nbsp;People are not disposable like a turkey leg. &nbsp;You cannot simply scrape them off your plate. &nbsp;They did not ask to be brought into this world, they are of your making and they deserve so much better. &nbsp;NO LEFTOVERS PLEASE.&nbsp;</div><div><br></div>joeybearsmomhttp://www.blogger.com/profile/17312273803247244366noreply@blogger.com0tag:blogger.com,1999:blog-6149215692860835618.post-71565962687241527382013-11-15T16:04:00.001-08:002013-11-15T16:04:07.809-08:00Autism: All Heart and Innocence<div>Autism: &nbsp;All Heart and Innocence&nbsp;</div><div><br></div><div>This week we had a tragic event happen in our neighborhood. &nbsp;Down the road from us a young lady runs a riding stable and school. &nbsp;I could walk there from my house. &nbsp;The barn that houses the horses is very close to the road itself. &nbsp;Many times you can see the children, some very young, leading the horses out of the pasture to the riding ring next to the barn. &nbsp;People tend to drive extremely fast on this road, taking into consideration that is is a residential neighborhood. &nbsp;When you drive up the hill to my house from the horse barn at certain times of the day, you get blinded by the sun. &nbsp;</div><div><br></div><div>This week I heard the sound of the local fire department sirens and could see down the road to a large assembly of emergency vehicles in the area of the barn. &nbsp;I wondered if one of the horses had escaped and caused an auto accident. &nbsp;It was the next day that we learned that a young lady, a riding student 15 years old, had been struck by a car.&nbsp;</div><div><br></div><div>I explained this to my son with autism. &nbsp;He listened quietly as I told him that some folks drive too fast. &nbsp;That we must never go near the road. &nbsp;That mom and all other drives must concentrate when they are driving and that it is a serious job.&nbsp;</div><div><br></div><div>Today I made the daily McD's run to get Joey's french fries. &nbsp;When I returned I saw him make his way to the computer printer in his bedroom. &nbsp;He extracted a piece of printer paper and brought it to the kitchen.&nbsp;</div><div>"I want to make a card for the girl that got hit by the car", he announced. &nbsp;</div><div><br></div><div>Now, my son loves to make cards for family members around the holidays. &nbsp;When he was home sick the entire school term last year, he wrote letters and cards to his best friend in class. &nbsp;The content was usually something related to "Blues Clues". &nbsp;</div><div><br></div><div>I offered to help him with the message for this card:</div><div><br></div><div>"Get Well Soon"</div><div><br></div><div>Emily, I hope you are riding your horse soon!"</div><div>Love, Joey XOXOXO</div><div><br></div><div>I am soooo proud of him. &nbsp;To think of this on his own, to empathize with someone who is in pain, to offer to do something for someone else, is monumental for him.</div><div><br></div><div>We made the card. &nbsp;I inserted a little note with a picture of Joey for the parents to read and understand why it is such a basic piece of artwork. &nbsp;</div><div><br></div><div>I hope the understand that for him it was a great accomplishment and that he hopes that their little girl gets better. &nbsp;</div><div><br></div><div>Another example that our kids are truly full of heart and innocence. &nbsp;Something to be applauded and copied.&nbsp;</div><div><br></div><div><div class="separator" style="clear: both;"><a href="https://lh6.googleusercontent.com/-exLt4DISOJE/Uoa2djA1tII/AAAAAAAAG3U/GRHcp9fxsOw/s640/blogger-image--542497777.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh6.googleusercontent.com/-exLt4DISOJE/Uoa2djA1tII/AAAAAAAAG3U/GRHcp9fxsOw/s640/blogger-image--542497777.jpg"></a></div><br></div>joeybearsmomhttp://www.blogger.com/profile/17312273803247244366noreply@blogger.com0